Caregiver Stories

01
Sep

Falls

Q1: Has your life been touched by a Traumatic Brain Injury?

Yes

Q2: How have you been touched by a Traumatic Brain Injury?

Survivor

Other (please specify) Mom died from fall-caused TBI, caregiver of TBI survivor Dad, friends with

Q3: Summary – the cause – the injury – today’s quality of life?

I had 6+ concussions, 3 as a child, 3 as an adult. The 6th(fall on ice) was 20 years after the 5th(car-bicycle collision) but the last 2 each left residual cognitive challenges, worse after the 6th. I have impaired visual and auditory processing, short term memory deficits, attention, word-finding and vision issues. My career as a family doctor and medical clinic administrator ended, and I gave up flying my plane due to vision, spatial orientation and attention challenges. I miss the challenges and satisfaction I got from practicing medicine, but have replaced it with volunteer work educating the public and professionals about brain injury as well as being a full time caregiver for my TBI survivor dad. As I wrote in a piece for the Chicken Soup for the Soul, Recovering from Traumatic Brain Injury book, I believe that I’m right where I’m supposed to be.

Q4: Please share your experience at the time you became aware of the injury?

I was wearing skis but actually standing still looking at the beauty around me when somehow I slipped and fell backward, hitting my helmeted head on the icy ground. I hit hard, and had an instant significant headache. I wasn’t sure if I’d been knocked out, but some things were happening around me that made me suspect I’d been out or confused a bit. I was skiing alone, so had no one to check in with. I tried another run, but was beginning to feel nauseated so figured I’d been concussed. I drove 90 miles home and over the next week became increasingly more confused, developed double vision and eventually had severe PCS. After 2 months of being lost, scared and confused I was “found” by a case manager in my non-profit HMO and hooked up with outpatient rehabilitation. From there my journey to a new me began and continues.

Q5: Tell about the experience immediately after the injury. Surgery? Coma?

I used to tell folks that after hitting my head I had an alphabet soup of problems; CRS (can’t remember shi-), AD (Alzheimer’s Dementia), ADHD (Attention Deficit Hyperactivity Disorder), GAD (General Anxiety Disorder) and RLS (Restless Leg Syndroms). My journey did not involve any hospitalizations. I had an urgent care visit with a normal CT scan, and ER visit with another normal CT after worsening symptoms, followed by a normal MRI and a neurologist telling me I had PCS (post concussion syndrome) and that I’d know when I was better and when I was to return to my work as a family doctor. She gave me 2 weeks off of work and scheduled no follow up. I thought I was going crazy because I wasn’t getting better and didn’t know why. I’d just “rang my bell,” and expected full recovery quickly. Not!!!

Q6: Tell us about the hospital stay after the survivor was no longer in a coma

none

Q7: Tell us about the time in rehabilitation?

I attended outpatient rehab at Mapleton Rehabilitation Hospital in Boulder, CO for about 6 months under the care of a PM&R specialist. There I saw a cognitive therapist and social worker, as well as participating in weekly hikes with a group of survivors and 2 therapy staff. I also was under the care of a neuropsychologist at Craig Hospital in Denver who evaluated efficacy of different medication trials. On my own I saw a optometrist I’d seen present at a state BI conference who did vision therapy with good help in reading deficits.

Q8: Tell us about coming home! never left that goodness

Q9: “Please type some single words that describe how TBI has touched your life. For example: Frightened, confused, sad, etc. Enter as many or as few words as you like. Separate each word with a comma”

scared, overwhelmed, TIRED, frustrated,”stupid”,then adapt, adjust, accept and move on

 Q10: What year did the injury happen? 2002

Q11: Tell us about life today?

Today I am “retired” on private disability and a full time caregiver for my 83 year old TBI survivor dad. I volunteer as a presenter on topics related to TBI/BI and serve on the BIAA Advisory Committee. I am passionate about spreading awareness about TBI, as well as helping others do that. I’m leading a project of the Advisory Committee of BIAA to develop a National Directory of Speakers, “People with Brain Injury, Presenting Brain Injury” I also authored a book, “Brain Injury Survival Kit, 365 Tips, Tools and Tricks to Deal with Cognitive Function Loss.”

 

Q12: What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?

One of the hardest things to come to peace that you will not be who you were before, but you can be a great person going forward, sometimes even better than who you were. Find strategies and tools to assist you in the challenges you have from your brain injury, just as someone would do after losing a limb, their vision or their hearing. Take care of yourself, you are more than just a brain injury, you have all the potential health problems of anyone else. Good health helps you and your brain function best. Find support through others who are on the same journey, with local support groups or online support. It helps to interact with others who “get it.”

PAGE 8: About You
Q13: Please your name and email address

Name: Cheryle Sullivan
Email Address: cherylesullivan@nullyahoo.com

Q14: This information will be used to provide hope for others touched by TBI. Please indicate your permission to post your story on our blog and web site? Your name or email address will not be used with the posting.

Yes, you have permission to post my input

 

 

01
Sep

Denial

Q1: Has your life been touched by a Traumatic Brain Injury?

Yes

Q2: How have you been touched by a Traumatic Brain Injury?

Caregiver

Q3: Summary – the cause – the injury – today’s quality of life?

My mother was in an abusive relationship. I moved out because of this man, I couldn’t stand him but I could understand love. And my mom was in love with him.

It was July 29th when we left to stay with a friend, and a week later my mother went out for karaoke. August 6th is the day that changed her life.

I remember hugging her a lot before she left, telling her to be safe, wishing I could ask her not to go. At the time, I had no idea that she was going to see him.

I stayed up that night, playing idly on internet, waiting foe her to get home.

The door opens, I turn to see my mother peeking through around the door. She’s crying., eyes blood shot, face swollen past any degree I’ve ever witnessed.
She steps into the room, over head lights revealing her face, half covered in purple bruises, there’s a huge knot on her head, one eye is swollen shut.

I panic. Immediately calling 911 and screaming. She tells me to hang up but I call anyway. They arrive in minutes. She tells me he tried murdering her, she fought for her life, but sustained life changing injuries.

They told us they were going to catch him, and they did. He got a very shirt sentence in jail, and when he was out he began to stalk and terrorize my mother.

Her brain injury has so many intricacies and other issues that I couldn’t list them all. I know it’s degenerative, and it has affected every single aspect of my mother’s life and more.

And quality of life? Its different depending on the day and her mood. She’s a pretty great actress, she suffers a lot more than she tells me about. We have good days, especially when we heat properly, get good rest, communicate and be positive. There are difficult days to- but they can be changes into a better day with the right approach.

I love my mother, and I’m so happy to get to have her after she was almost taken from me forever. I’m happy thas care taker, and not an orphan.

Q4: Please share your experience at the time you became aware of the injury?

I didn’t understand the gravity. We found out a few weeks later. We stayed together foe a few months and in Me and my mother had a difficult relationship, I couldn’t understand the anger, and many other things that were caused by the injury I didn’t understand. Succumbing to pressure, stress, and anxiety, I did the worst thing I could have.
I left.
And I didn’t know how it would affect my mom negatively, but it did
I didn’t read or research her brain injury because I was in denial. Very strong denial

Q5: Tell about the experience immediately after the injury. Surgery? Coma?No coma, and no Surgery. We didn’t have insurance, they told us that no measures could be taken to reverse the

damage.

Q6: Tell us about the hospital stay after the survivor was no longer in a coma

Respondent skipped this question

PAGE 5: Your Story
Q7: Tell us about the time in rehabilitation?

Respondent skipped this question

Q8: Tell us about coming home!

Respondent skipped this question

Q9: “Please type some single words that describe how TBI has touched your life. For example: Frightened, confused, sad, etc. Enter as many or as few words as you like. Separate each word with a comma”

Afraid, confused, hurt, life-changing, growing, learning, trying,

Q10: What year did the injury happen?

2013


Q11: Tell us about life today?

My mom has indeed come q long way
She tries so hard, and gets mad at herself because she doesn’t feel like she is who she was. I love her and am so proud of her. She is my hero.

Q12: What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?

LEARN ABOUT IT!!! It may be hard to take it all in. But things will be easier and I’ve wasted too much time in denial, not dealing with the issues and it’s done squat.

Q14: This information will be used to provide hope for others touched by TBI. Please indicate your permission to post your story on our blog and web site? Your name or email address will not be used with the posting.

Yes, you have permission to post my input

 

01
Sep

Overwhelmed

 

Q1: Has your life been touched by a Traumatic Brain Injury?

Yes

Q2: How have you been touched by a Traumatic Brain Injury?

Caregiver

Q3: Summary – the cause – the injury – today’s quality of life?

Motor vehicle accident with TBI and left side parilization. Five years post injury with plateau of development.

Q4: Please share your experience at the time you became aware of the injury?

Fear, helplessness, overwhelmed.

Q5: Tell about the experience immediately after the injury. Surgery? Coma?

Coma for 7 months.

Q6: Tell us about the hospital stay after the survivor was no longer in a comaImmediately transfer from rehab facility because not meeting criteria. Moved to extended nursing facility until

emergence.

Q7: Tell us about the time in rehabilitation?

Rehab brief due to not meeting criteria.

Q8: Tell us about coming home!

Removed from care facility as soon as awareness of surroundings to home.

Q9: “Please type some single words that describe how TBI has touched your life. For example: Frightened, confused, sad, etc. Enter as many or as few words as you like. Separate each word with a comma”

Overwhelmed, exhausted, thankful, angry, and see no foreseeable end.

Q10: What year did the injury happen?

2009

PAGE 7: Your Story
Q11: Tell us about life today?

Completely overwhelmed. Little to no help available, no understanding from family or friends.

Q12: What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?

Accept it for what it is. Delusion is not helpful to the survivor or caregiver. The survivor may never get better than what you have today and that’s okay.

Q14: This information will be used to provide hope for others touched by TBI. Please indicate your permission to post your story on our blog and web site? Your name or email address will not be used with the posting.

Yes, you have permission to post my input

 

08
Jul
istock_000008248333xsmall

Caregiver Story #14

Summary – the cause – the injury – today’s quality of life?

This is hard to describe. I work in cognitive rehabilitation in brain injury and every story is different. I’ve known people who had been in car accidents, organic illnesses, failed suicide attempts, strokes, heart attacks, falls, and one gentleman who had been beaten while in prision; he was schizphrenic prior to his injury but back then, he was imprisioned, not institutionalized. There is also a wide range of injury’s, in both location and impact on the person.

(more…)

17
Mar
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“Don’t give up hope”

Summary – the cause – the injury – today’s quality of life?

Daughter got on the back of a motorcycle after drinking to forget death of stepfather from complications resulting from an aneurysm. Motorcycle accident, drinking, not thinking, no helmet. Jane Doe at the hospital for 6 hours.

 

Please share your experience at the time you became aware of the injury?

Scared she would die, scared she would live.

(more…)

12
Feb
istock_brain_nurse_view

“You Babysit Forever”

Summary – the cause – the injury – today’s quality of life?

Cause by collision with train 20 y/a to friend,we’re poor.

 

Please share your experience at the time you became aware of the injury?

He didn’t remember me then or now.He knows I’m a friend and caregiver now.

(more…)

11
Sep
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Caregiver Story #11

Has your life been touched by a Traumatic Brain
Injury?

Yes

 

Summary – the cause – the injury – today’s quality of
life?

My Husband had a near fatal car accident in April of 2008 and had TBI. Our
quality of life has drastically changed, as has our Family dynamics and we
struggle daily to understand and cope with the changes

Please share your experience at the time you became aware of
the injury?

(more…)

01
May
istock_brain_side_view

“A dance of one step forward and two steps back…”

Summary – the cause – the injury – today’s quality of
life?

motorcycle accident – severe traumatic brain injury – quality of life is
slowly but continually improving one day at a time, but is dramatically
different from life before the accident

 

Please share your experience at the time you became aware of the
injury?

I was just getting home from a fun day of shopping with our daughter when my
husband’s friend called.

(more…)

27
Mar
istock_000008248333xsmall

“IT WILL TAKE TIME”

Summary – the cause – the injury – today’s quality of
life?

2005 Custom Harley vs 2007 Ford Focus; he was 15 feet from our driveway when
she pulled quickly away from a stop sign “to beat the truck on the road”, only
there was a bike on the road too. And she never looked. She got a ticket. Our
lives have changed forever. He was a full-time insurance agent with his own
agency, and a part time Pastor at our church. Left Frontal Lobe initial impact
WITH HELMET. Brain then sloshed into right side as well. Blood clot removed
along with all damaged tissue 21 hours after initial impact.

(more…)

30
Jan
Brain Image Top

“Love and Hope shall prosper”

Summary – the cause – the injury – today’s quality of
life?

I have been taking care of my husband Joe for over 5yrs..he suffers from a
mototrcycle accident.

 

Please share your experience at the time you became aware of the
injury?

I was a basket case..some old lady took away..my life as I knew it with my
husband..now I just hope I open my eyes to see the next day.

(more…)

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