Traumatic Brain Injury Caregiver | Surviving Traumatic Brain Injury

TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Traumatic Brain Injury Caregiver’

On the Air: . . . . . . . . . . . . “Another Fork in the Road” Panel: Cognitive & Memory Deficits After Brain Injury

On the Air: “Another Fork in the Road”

Panel: Lisabeth Mackall and GeorgeAnna Bell

Cognitive & Memory Deficits After Brain Injury

presented

Donna O’Donnell Figurski

images-1 Memory loss and cognitive deficits are both prevalent for many survivors after brain injury. Memory loss literally leaves many folks feeling a loss of control over their lives. Cognitive deficits can leave one feeling less than whole.

Lisabeth Mackall – Caregiver, Author, Speech Therapist

My panel, caregiver, Lisabeth Mackall and survivor, GeorgeAnna Bell joined me to discuss how memory loss and cognitive deficits affect them personally and how the deficits hinder their family dynamics. They offered suggestions that have worked for them.

Click on the link below to listen to the show.

GeorgeAnna Bell – Survivor

See you “On the Air!”

On the Air: “Another Fork in the Road”

Cognitive & Memory Deficits After Brain Injury

(Clip Art compliments of Bing.)

(Photos compliments of panelists.)

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SPEAK OUT! . . . . . . . . . . . . . Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

presented by

Donna O’Donnell Figurski

Itty-Bitty GIant Steps for Blog SPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.

If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at neelyf@aol.com.

If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your last name to be posted, please tell me in your email or Private Message.)

I hope we have millions of Itty-Bitty Giant Steps.

Here is this week’s Itty-Bitty GIANT Steps

051916 Roberts, Crystal Caregiver for Son

Ethan – Survivor

Ethan (survivor)…submitted by his mother, Crystal Roberts (caregiver)…My son is

starting to crawl. He suffered a severe TBI (traumatic brain injury) and a stroke in an accident that happened two years ago.

This is my son’s first attempt.

Robert Williams (survivor)…Never thought I would garden again. I had a tumor surgically removed from my brain stem, and I was in a wheelchair for over five years afterwards. The doctors didn’t think I’d ever walk normally again (but God makes the impossible possible).

Pictures of me gardening.

Robert Williams – Survivor

Robert Williams 2

Robert Williams – Survivor

YOU did it!

Congratulations to contributors!

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.

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(Clip Art compliments of Bing.)

(Photo compliments of contributors.)

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SPEAK OUT! . . . . . . . . . . . . . . Faces of Brain Injury – Evonia with her Mom, Amber Baxley

SPEAK OUT! Faces of Brain Injury –

Amber Baxley (caregiver for her two-year-old daughter, Evonia)

presented

Donna O’Donnell Figurski

Brain Injury is NOT Discriminating!

bigstock-cartoon-face-vector-people-25671746-e1348136261718 It can happen to anyone, anytime, . . . and anywhere.

The Brain Trauma Foundation states that there are 5.3 million people in the United States living with some form of brain injury.

On “Faces of Brain Injury,” you will meet survivors living with brain injury. I hope that their stories will help you to understand the serious implications and complications of brain injury.

The stories on SPEAK OUT! Faces of Brain Injury are published with the permission of the survivor or designated caregiver.

If you would like your story to be published, please send a short account and two photos to me at neelyf@aol.com. I’d love to publish your story and raise awareness for Brain Injury.

Evonia – Brain Injury Survivor

(Note: Today, May 19th, 2016 marks Evonia’s first anniversary of her brain injury. She has a long road ahead, but she has a very loving and supportive mother who will help her through)

Amber Baxley – Mother of Evonia – Survivor

I’m feeling emotional. Today is the one-year anniversary of my daughter’s brain injury. (My daughter, Evonia, will be three next month.) Evonia’s life was forever changed a year ago today. At 3:00 pm on May 19^th, 2015, my now two-year-old daughter was shaken and got her traumatic brain injury (TBI). There is not a day that goes by that I don’t wish I could go back to that day and stop it from happening. I made a huge mistake that day. I chose to leave my daughter and her big brother with a man I thought I could trust – a man I thought loved his family, especially his children, more than anything in the world. Man, was I wrong! I wish I had taken my children with me. That day, not only did my daughter’s life forever change, but also I learned that you cannot always trust those who are supposed to be the ones you can trust.

Evonia – Brain Injury Survivor

Evonia spent three weeks in a coma fighting for her life because of him. She spent three months in the Pediatric Intensive Care Unit trying to recover some. My daughter had bleeding of the brain caused by her having been shaken. The blood tried to clot and caused a stroke. As of now, my little girl has had a total of five brain surgeries. She’s also had surgery to place a feeding tube into her stomach and another to remove it. Evonia will likely need to have other surgeries as she gets older. Before everything happened, Evonia was a bright, bubbly little girl – full of life. Because she was always exploring, she was always getting into things. Evonia was perfectly healthy. Now she has to fight to regain every milestone she had already surpassed.

Evonia – Brain Injury Survivor

I so wish I could go back and do that day over again. She would have never had to go through this. If I could, I would do it in a heart beat.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Comment” below this post.

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Faces of Brain Injury

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Image

SPEAK OUT! Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

presented by

Donna O’Donnell Figurski

Itty-Bitty GIant Steps for Blog SPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.

If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at neelyf@aol.com.

I hope we have millions of Itty-Bitty Giant Steps.

Here is this week’s Itty-Bitty GIANT Steps

Christy Martin Parsons (caregiver)…It doesn’t look like much to most people, but I know you all will understand Wesley Parsons what a victory this is. After forty-two days in bed, my husband was able to be assisted to the wheelchair and go down and tour physical therapy without having blood pressure issues, or getting sick, etc. We’ve had a bad day today, so I had to look at this picture from yesterday to remind myself that he will get there and that it will get better!

JR Vigil (survivor)…I shaved some serious time off my 100 metre at the pool. Yesterday I came in at 1:40! That’s with no legs! I like to imagine how fast I’d be with legs, which would enable me to do flip turns! boy-swimming-clip-art-620535

YOU did it!

Congratulations to contributors!

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it intact with your enemies. I don’t care!

Feel free to “Like” my post.

(Clip Art compliments of Bing.)

(Photo compliments of contributor.)

Written

on April 9, 2016

On The Air: Brain Injury Radio “Another Fork in the Road” . . . . . Grief After Brain Injury

On The Air: Brain Injury Radio “Another Fork in the Road”

Grief After Brain Injury

presented

Donna O’Donnell Figurski

images-1 Grief is often an after effect of brain injury. It is experienced not only by the survivor, who may have lost his or her “old” self and is trying to adjust to his or her new world, but also by those who have frequent contact with the survivor. As we know, brain injury affects ALL members of the family, who are often the caregivers.

Lisabeth Mackall caregiver & author

Panelists, Sandra Williams (both survivor and caregiver), Dr. David Figurski (survivor), and Lisabeth Mackall (caregiver) joined me to discuss the topic of GRIEF. We examined the feelings of the family as they adjust to their loved one’s change, as well as discussed the stages of grief as outlined by Dr. Elisabeth Kübler-Ross in her book entitled, “On Death and Dying.”

Sandra Williams survivor & caregiver

David Figurski survivor

If you missed this show about “Grief After Brain Injury” with Lisabeth Mackall (caregiver), Sandra Williams (survivor and caregiver), and David Figurski (survivor) on March 6th, 2016, don’t fret. You can listen to the archived show here. Click the link below.

See you “On the Air!”

On The Air: Brain Injury Radio “Another Fork in the Road” Grief After Brain Injury

(Clip Art compliments of Bing.)

(Photos compliments of guests.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Comment” below this post.

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SPEAK OUT! Guest Blogger Heather Sivori Floyd . . . . . Thoughts from a Caregiver Mom

Thoughts from a Caregiver Mom

Heather Sivori Floyd

presented

Donna O’Donnell Figurski

Girl Blogger cartoon_picture_of_girl_writing There is nothing sweeter or more rewarding in life than spending time and helping those with special challenges.

I do not like the word “disability,” so I use “special challenges.” Why define people by what they are or are not capable of? While some days my heart hurts from my knowing the challenges that TJ (now 13) will face in life, my heart is actually very full from my spending the time with him that I do.

Heather Sivori Floyd – Caregiver

As I tucked TJ in the other night, I just sat there in a moment of silence and reflected back on everything we have been through. He has an innocence about him now. But I was overcome with a moment of sadness thinking about all that was ripped from TJ at such a young age (7 years old) and the special challenges that he will be faced with in adulthood.

I try not to think like that, but sometimes a parent does. I would say that it is quite normal. The burden a parent carries when advocating for his or her child with special challenges will at times take your breath away. You constantly question if you are doing the right thing or if you could be doing more. You realize that, even into adulthood, your child’s ability to have a voice is gone. You will forever be your child’s voice. You accept that, and you do what you have to do to make that voice heard – even if it means roaring.

TJ – Brain Injury Survivor

Over the years, people have told me not to worry about the future. But it is never a possibility. I know my mom-friends in a similar position will understand this. When in a position like this, you have to think about it. It’s really not an option. You are the sole caregiver, and if you do not make a plan for the future, no one else will. Also many programs to help children like TJ as an adult have a mile-long waiting list (meaning years).

TJ – Brain Injury Survivor

Being TJ’s sole caregiver has been challenging and exhausting but, at the same time, very rewarding. I have learned so much about myself and my desire to help others. I have learned from TJ about the human spirit and not giving in. He amazes me daily. Yes, things are very elementary for TJ now. His day consists of food, cartoons, therapy, etc. – very basic needs. In-depth conversation has never been a possibility with my son since his brain injury so mercilessly ripped away his dignity and his ability for independence. The list goes on. But that doesn’t mean we give up. TJ certainly has not.

With love and persistence, TJ has defied the odds. After all, 60-80% of patients typically do not survive an acute subdural hematoma, even with surgery. TJ did. He continues to defy the odds and what we were told would be our “new normal.”

Heather Sivori Floyd, caregiver for her son, TJ

I am often asked how I do it. (It is a general question, and it is the most-asked question from many family members and friends over the years.) I just do it. You do not have a choice. Many times your heart hurts like no other, but you keep going because you are it for them. There is no one else. You learn to draw on inner strength. You learn to keep it together because you can’t afford to break down.

In my case, I learned from my son how to love life and still laugh. TJ does daily. If he can, then so can I. It doesn’t make the special challenges any easier or the decisions to be made any

Heather Sivori Floyd and her son, TJ

less hurtful. What it does is fill your heart with an overwhelming love. I am honored to know a person like TJ in my life. He is the definition of courage, strength, hope, and love. I’ve said it before, and I will say it again: He is my hero. To overcome daily adversity with a smile on his face makes him downright amazing. No matter where he ends up intellectually, TJ will always be pretty amazing to me.

Thank you, Heather Sivori Floyd.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

(Clip Art compliments of Bing.)

(Photos compliments of Heather Sivori Floyd)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Comment” below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

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SPEAK OUT! . . . . . . . . . . . . . . . . . Guest Blogger: Miki Mashburn-Bailey “Awareness: TBI Survivor Advocate”

Awareness: TBI Survivor Advocate

Miki Mashburn-Bailey

presented by

Donna O’Donnell Figurski

It has been twenty years since my husband’s traumatic brain injury (TBI). Unawareness has been our enemy and hurt us tremendously. Awareness has found its place in our home just this past year, and it has brought along with it forgiveness, acceptance, and understanding.

Awareness has turned our life around. And, everyone who suffers from a TBI deserves to understand this life he or she lives. So obviously, awareness is important to me. It has become my passion. I ask you to help me prevent further damage by making the world aware. Your response could save a life – a marriage – a family.

My husband was hit in the head by a brake drum that had flown off an eighteen-wheeler. The brake drum was traveling at highway speed. It wasn’t actually a “car accident,” but it was an unnecessary and unfortunate accident. (It’s for a reason such as this that you can receive a ticket for “failure to maintain your vehicle.”) My husband’s car veered to the left. The barrier between the highway lanes slowed him to a stop, as he was combative and lost all control of his being. An ambulance just happened to be driving by soon after, and the EMS (Emergency Medical Services) team just happened to look down into my husband’s vehicle. They saw him and took immediate action.

I am thankful for this EMS team because they helped save my husband’s life. They responded quickly and effectively, and my husband was rushed to the nearest trauma center. The team there responded quickly, and the surgeon was able to do what was necessary to prevent further damage. This man and the trauma center team saved my husband’s life. I am forever grateful to them. They did their jobs, and they did them well. Had the EMS team not responded in the manner they did, it would’ve made the trauma center’s job more difficult.

My husband survived an incident he should not have. He improved much sooner than expected. He recovered miraculously and was discharged earlier than expected. I am thankful to everyone. They did their jobs well.  HOWEVER, there was still a job that was necessary. There was still work to do. There was still much-needed therapy. There was still much-needed counseling.  A life was saved, but it was forever changed, and no one was there to help make sense of it. No one was there to guide my husband and me to the next step. No one was there to warn of the subtle changes that have huge impacts. No one was there to enlighten and give insight as to what to expect next.  EMS did a great job and sent us on to the next step – the trauma center. The trauma center did a great job and sent my husband on into surgery. The surgeon did a great job.

But, the only place left to pass my husband on to was home. “No more treatment necessary” written on discharge papers means “There is no more left for us to do on our end,” but, to the sufferer of a TBI, it reads as, “You’re fine. You will heal right up!”  My husband and I go home. We expect things to be different. We adjust. We assume time is all that’s needed. Time marches on, and things don’t improve, or we begin to notice this and that here and there. By the time we recognize things aren’t healing cognitively as well as they are physically, we go to a doctor confused and try to communicate our concerns. My husband is brushed off because he “looks fine.”

Trauma centers need to have a “TBI Survivor Advocate” to hold the survivor’s hand into the next step of the TBI journey – not to hand out written material that will be lost in all of the other paperwork given at discharge. TBI Survivor Advocates would sit down with survivors and their families and/or friends and help them understand that, while EMS and the hospital saved the survivors’ lives, there are others who will help survivors LIVE their lives. TBI Survivor Advocates could direct and guide survivors to find therapists and counseling that will help transition and adjustment to their “new normal.”  A disservice was done to my husband – to his future, to the company he worked for, to our relationship, and to our family.  We were denied effective help and expected to carry on, due to my husband’s “miraculous” physical healing. Because of that, the cognitive damage that affected his being never got the attention or therapy it desperately needed.

Awareness of the reality of TBI as often being an invisible disability is vital in the health of the world we all live in. TBI is a thief in the night and has no prejudice. It can happen to anyone of any status. Please help me make others aware. We can be that hand that guides others to their next steps in their journeys. The world we live in is full of those who have influence. A difference CAN be made in the way a brain-injured individual adjusts to his or her new life. All it takes is ONE person to make a difference. The more we help one another, the better our world becomes.

Thank you, Miki Mashburn-Bailey.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

(Clip Art compliments of Bing.)

(Photos compliments of Miki Mashburn Bailey)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Comment” below this post.

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On The Air: . . . . . . . . . . . . . . . . . . Brain Injury Radio “Another Fork in the Road” Janiece Naber Martindale “Caregivers Need Care Too”

On The Air: Brain Injury Radio “Another Fork in the Road”

with

Janiece Naber Martindale

Topic: Caregivers Need Care Too

presented

Donna O’Donnell Figurski

Janiece Naber Martindale knows a lot about caregiving. She is a two-time caregiver – first for her husband, then for an elderly friend. Janiece says that her caregiving responsibilities were very different for each person. Janiece and I examined what it takes to be a good caregiver.

If you missed this show, “Caregivers Need Care Too” on “Another Fork in the Road” with Janiece Naber Martindale anoon September 20, 2015 don’t fret. You can listen to the archived show here. Click the link below.

See you “On the Air!”

On The Air: Brain Injury Radio “Another Fork in the Road” with Janiece Naber Martindale: “Caregivers Need Care Too”

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Comment” below this post.

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Caregivers SPEAK OUT! . . . . . Janiece Naber Martindale

Caregivers SPEAK OUT! Janiece Naber Martindale

presented by

Donna O’Donnell Figurski

1. What is your name? (last name optional)
Janiece Naber Martindale

2. Where do you live? (city and/or state and/or country) Email? (optional)

Chickasaw, Alabama, USA

3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

My husband, James Martindale, was 61 when he was diagnosed with multiple system atrophy (MSA, a progressive neurodegenerative disorder that affects the brain). In December 2008, my husband and I drove an empty semi-tractor to Calexico, California, to our drop yard. We were to pick up a loaded trailer for our trip home. Because of rain, the drop yard was extremely muddy. The semi got stuck in the mud, so James walked through the muddy yard looking for our loaded trailer, when he fell in the mud. James hurt his back at that time, and he began to complain of dizziness. He also complained of a nasty headache. I believe that that was the beginning of James’ MSA.

4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?

I began my husband’s care in June 2009. I was 45. I was his main caregiver. I am not now because my husband passed away on October 16, 2014.

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?

Yes, we were working at the time. But, we had to quit.

7. Did you have any help? If so, what kind and for how long?

My husband had hospice care for the two years before he passed away.

8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

For the first three years, I was the only caregiver, and I didn’t really have any help. But, I had a lot of help in the final two years with hospice care coming into the house.

9. Was your survivor in a coma? If so, what did you do during that time?

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

My husband had no rehab.

11. What problems or disabilities of your brain-injury survivor required your care, if any?

My husband had problems with his balance and his gait. He couldn’t write. He wasn’t able to drive a car. Eventually, he lost all ability to move. He had an upper respiratory infection.

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

My life is better because I now have the knowledge to help other people

13. What do you miss the most from pre-brain-injury life?

I miss being able to go out and ride around the Gulf coast together.

14. What do you enjoy most in post-brain-injury life?

It’s hard to enjoy life, since I have to start over all by myself.

15. What do you like least about brain injury?

My husband died too soon.

16. Has anything helped you to accept your survivor’s brain injury?

I just accepted it. It was the way of life.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

I had to stay at home a lot. I realized that I could change that when I had the help of hospice workers.

18. Has your social life been altered or changed and, if so, how?

My social life was affected at the time. Now I’m trying to put my life back together again with a husband.

19. What are your plans? What do you expect/hope to be doing ten years from now?

I plan to help someone who is living in this situation – I may even start a support-group, so people have a place to go and chat.

20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?

Keep a positive attitude. Hold your head high. Be patient. Encourage the survivor.

(Disclaimer: The views or opinions in this post are solely that of the interviewee.)

If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Comment” below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it with your enemies. I don’t care!

Feel free to “Like” my post.

Category:

Caregivers SPEAK OUT!

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Thank you, WORLD!

Thank You, World

Donna O’Donnell Figurski

I started my blog, “Surviving Traumatic Brain Injury,” in March 2014 when I saw a need to connect with other survivors and caregivers in the brain-injured community. I saw people struggling as I had as I tried to make sense out of this new life that visited us when my husband had his brain injury in 2005. At that time, I had no community to turn to. There were no social media. I felt lost and alone. I didn’t know there were other people living with many of the same problems that we were battling. But now, because of the rise of social media, there are many places for people to find information about brain injury, and I wanted to be one of those places.

In the more than ten years that my husband, David, has lived the brain-injured life, I have learned a lot, and I want to share my information with newcomers to this unexpected life. I want to provide a place where they can go to obtain information, but mostly I want to provide survivors and caregivers a platform to SPEAK OUT! I want them to share their stories and their opinions, and I want others to draw hope and courage and inspiration from those who are traveling a similar path.

This page was created to say THANK YOU to the survivors and caregivers who have so graciously shared their stories here with the hope of raising awareness of brain injury.

It was created to say THANK YOU to everyone in the WORLD who stops by to read it. In the year and a half since I created my blog, thousands of folks have stopped by from all over the world (nearly 50,000 at this point).
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Surviving Traumatic Brain Injury

TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Traumatic Brain Injury Caregiver’

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SPEAK OUT! Itty-Bitty GIANT Steps

On The Air: Brain Injury Radio “Another Fork in the Road” . . . . . Grief After Brain Injury

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