TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘blogtalkradio.com/braininjuryradio’

TBI Tales . . . . . . . . . . . . . . . . . . This Song Could Be a Caregiver’s Anthem

This Song Could Be a Caregiver’s Anthem

by

Donna O’Donnell Figurski

David & Donna Aunt Irene's Funeral 060718

 

I happened to hear this old hit song (“Lean on Me”) a couple of days ago. After listening to the lyrics, I realized it reflects what we caregivers do. We just want to help.

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We don’t look this bad.

As the song implies, we give much-needed help. “Lean on Me” could be our anthem. Give it a listen.

PS. I just had to dance with this man to that song and we each did a bit of “leaning on.”

 

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

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at neelyf@aol.com. I will publish as many stories as I can.

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Caregivers SPEAK OUT! . . . Theresa Friedle . . . . . . . (caregiver for her husband, Scott)

Caregivers SPEAK OUT!

Theresa Friedle (caregiver for her husband, Scott)

presented by

Donna O’Donnell Figurski

 

Theresa Friedle & Husband Scott IMG_20161112_102405896.jpg

 

1. What is your name? (last name optional)

Theresa Friedle

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

Tomahawk, Wisconsin, USA     theresaj4man@gmail.com

3. What is the brain-injury survivor’s relationship to you?

The survivor is my husband, Scott. At the time of the accident, Scott and I were engaged. We were married on June 3, 2017.

How old was the survivor when he/she had the brain injury?

The accident happened two days before Scott’s 47th birthday.

What caused your survivor’s brain injury?

We were both working as truck drivers. Scott was picking up a load of plywood, which needed to be tarped. Something happened when he was on top of the load spreading out the tarp, and he fell anywhere from thirteen to nineteen feet (depending on if he was standing upright). He landed on his head on a concrete floor.

4. On what date did you begin care for your brain-injury survivor?

Scott’s injury happened on October 27, 2016. It took me ten and a half hours to get to him. I’ve been at his side ever since then.

Were you the main caregiver?

At first, the doctors and nurses were Scott’s caregivers. When he was discharged from rehab on December 22, I became his main caregiver.

Are you now?

Yes

How old were you when you began care?

I was 46 years old.

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

At home, I had a young adult daughter, who was expecting her first child, as well as my younger two children (older teenagers).

6. Were you employed at the time of your survivor’s brain injury?

Yes. I was working for the same company as my (now) husband. I had a permit for a commercial driver’s license.truck4

If so, were you able to continue working?

No. However, I was told about a program through my state called “Family Care.” I now get paid to take care of my husband.

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

I learned a great deal from the doctors, nurses, and therapists who worked with Scott. I asked a LOT of questions. However, once Scott came home, other than my family pitching in with the chores – no. It’s my job.

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

Immediately – while Scott was in the neuro intensive care unit.

Scott’s family lives quite a ways away, so, to facilitate keeping them informed of his progress, I started a Facebook page about him. It turned out to be a wonderful support system.

9. Was your survivor in a coma?

Yes. Scott was in a medically induced coma. He had a craniotomy (to allow his brain room to swell), he was intubated, and he had two ports (one for meds and the other for nutrition).

If so, what did you do during that time?

I stayed by Scott’s side – talked to him and sang to him. I prayed. I kept his family informed, etc.

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)? Theresa Friedle & Husband Scott IMG_20170705_220110

Yes. Scott was transported to an inpatient rehab facility closer to home. They provided him with occupational, speech, and physical therapies.

How long was the rehab?

We were there for twenty-two days. Scott continues to see speech and physical therapists twice a week.

Where were you when your survivor was getting therapy?

I stayed with Scott in the rehab center.

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

When Scott was first home, he needed help with almost everything! He was still in a wheelchair, and he needed assistance toileting, dressing, bathing, and more. He now walks with a cane, needs occasional help toileting, can dress himself, can help cook meals, does simple crafts, etc. He can’t drive, so I also transport him to and from wherever he needs to go.

12. How has your life changed since you became a caregiver?

Our lives have changed dramatically. Everything we do revolves around Scott’s needs, doctor appointments, and outpatient physical and speech therapy appointments. We can no longer attend church services, and we cannot go anywhere where there will be loud, noisy crowds.

Is it better?

In some aspects, yes! I get to be home with my children, and I get to see my grandson more.ITheresa Friedle & Husband Scott & Grandkids MG_20170714_083217

Is it worse?

Yes. Scott is limited as to the things we can do, and we cannot drive a semi right now – if ever.

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

I miss going to church and driving a semi. The semi meant super-long days and hard work strapping and tarping loads. Driving it was often scary with how some people drive around us. But, it was something I’ve wanted to do since I was a teenager!

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

I love that I’m able to be home with my family! I love that I get to take care of Scott, who remains a super-loving wonderful man!

14. What do you like least about brain injury?

Scott’s constantly in pain.

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

AliveWhat has helped me most is being super-grateful that Scott’s ALIVE! I feel that, even if Scott stays how he is now, we still have a great deal to be thankful for.

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

Of course it has! Every aspect of our life has changed. We had to move our bedroom to the dining room because Scott cannot climb up and down the fifteen stairs to the upper level. Our laundry room is currently being remodeled so that Scott will have a shower. Now, I have to give him sponge baths in the kitchen. My children are happier because we’re home most of the time now. Through the Facebook page I created, I was able to develop a relationship with Scott’s family. They are so warm, loving, and welcoming.

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

We seldom eat at restaurants anymore. The busyness of them overwhelms Scott. We can’t go to church for the same reason. Social events are out. Friends can only stay for an hour or so, otherwise Scott’s exhausted. At this point, most of my social life is through Facebook. Honestly, we’re NOT dwelling on that!

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

We’ve discussed a few options, but none that is viable at this point. Until we know how permanent various parts of Scott’s injuries are, we really cannot plan much of anything. We make tentative plans for a week or two at a time, knowing that we can only do them IF Scott is having a good day that day.

19. What advice would you offer other caregivers of brain-injury survivors?

Caregiver Tips -clipart-blackboard-helpful-tips-detailed-illustration-heplful-text-43676517This is a SUPER-hard job, as our emotions are involved!

Be gentle with yourself and super-patient with the PERSON you are caring for.

Join support-groups, even if you can’t physically attend a group. (I have found several through Facebook by entering “TBI support groups.” TBI=traumatic brain injury.)

Make sure you get the rest you need.

The hardest for me? ASK for help when you need it!

Celebrate each step forward. Little steps are STILL STEPS!

It’s going to be a very long road. Educate yourself about TBI.

Get involved with the therapists – you will get a better sense of what your loved one can and can’t do. (This helped me tremendously with selecting activities for Scott. I wanted to give him something that he CAN do – so he has a sense of ACCOMPLISHMENT. I praise his efforts, regardless of his success. I don’t live with Scott’s pain – but I can see how HARD various tasks are for him to do. When Scott is frustrated that he can’t do something that he used to do easily – Scott’s usually upset about household chores, etc. – I remind him that there is a HUGE difference between CAN’T and WON’T!)

Take notes when you go to various doctors. I have found that their records are often INCORRECT.

Life is very, very different than what we had envisioned, but “different” does NOT need to equate with “bad.”

Attitude is EVERYTHING!

It’s OK to cry.

It’s OK if all the chores aren’t completed every day. Your best IS good enough. Know that your best fluctuates every day – sometimes several times a day. One day you will be able to get everything that you want to do done! Woohoo! Another day, your best is simply getting out of bed!

YOU ARE NOT ALONE! 

20. Do you have any other comments that you would like to add?

Sometimes reading the answers to these questions sparks more questions. I would be happy to explain further.

 

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 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.

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New NEWS: My Radio Interview about My Upcoming Book

New NEWS: My Radio Interview about My Upcoming Book

presented by

Donna O’Donnell Figurski

Jamie Crane-Mauzy 053118

Jamie Crane-Mauzy

 

On May 27, 2018, Jamie Crane-Mauzy, a host on the Brain Injury Radio Network, interviewed me about my upcoming book (Prisoners without Bars: A Caregiver’s Tale), which will be available to the public on November 1, 2018, but that can be pre-ordered now. The 80-minute show has been archived and can be listened to at any time.

Donna O’Donnell Figurski

Prisoners

Prisoners without Bars: A Caregiver’s Tale

 

 

 

 

 

 

 

 

 

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 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.

Past Blast . . . . . . . . . . . . . . . . Brain Injury Resources . . . . . . . . The Crash Reel – Kevin Pearce

Brain Injury Resources………The Crash Reel – Kevin Pearce

(originally published March 30, 2014)

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The Crash Reel” is a gripping 4+ star movie about Kevin Pearce, a champion snowboarder who was expected to win a gold medal in the 2010 Winter Olympics.

Kevin Pearce - after TBI

Then his dream was interrupted by a Traumatic Brain Injury (TBI.)

There is amazing footage of Kevin before and after his crash.  The incredible love and concern of his family is readily apparent.  Kevin’s dream is different now, and he has found a useful and fulfilling life.

The movie/documentary will give you an inside look at one young man’s battle with TBI. I highly recommend the movie.

(Clip Art compliments of Bing.)

As I say after each post:

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

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

If you REALLY 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. That works for me too!

 

 

 

Survivors SPEAK OUT! . . . . . . . Carole Starr

Survivors SPEAK OUT! Carole Starr

presented

by

Donna O’Donnell Figurski

 

Carole Starr Survivor Speaker

Carole Starr – Brain Injury Survivor – Author of “To Root and to Rise”

1. What is your name? (last name optional)

Carole Starr

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

Maine, USA

3. On what date did you have your brain injury? At what age?

I had my brain injury on July 6, 1999. I was 32 years old.

4. How did your brain injury occur?

I was in a car accident. My vehicle was broadsided on the driver’s side by someone going about 50 mph.

5. When did you (or someone) first realize you had a problem?

My brain injury was diagnosed about six weeks after my accident. It was the physical therapist I saw for the whiplash who realized that I also had a brain injury. It became apparent to me when I tried to return to my regular life and struggled with tasks that used to be easy.

6. What kind of emergency treatment, if any, did you have?

After my accident, I was transported by ambulance to the emergency room. They diagnosed me with severe whiplash and other soft tissue injury. The signs of the brain injury were there, but they were missed.

7. Were you in a coma? If so, how long?

I was not in a coma.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I didn’t receive any brain injury rehab until nearly a year after my injury. That was the worst year of my life, as I tried and failed numerous times to return to my old life. A physiatrist referred me to outpatient brain injury rehab. I’ve had physical, occupational, speech, and recreation therapies and counseling. I’ve also found help from alternative therapies, including cranial osteopathy, neuro-optometry, and homeopathy. I received rehab therapies on and off for several years. I still see several medical professionals, and I continue to make slow progress, even after more than eighteen years.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

tired-womanI am plagued by extreme mental fatigue, sound and light sensitivities, balance issues, memory loss, visual midline shift, and difficulties with decision-making and problem-solving.

10, How has your life changed? Is it better? Is it worse?

My life changed dramatically after my brain injury. I had to give up my teaching career and my classical music hobby. I struggled to manage everyday-life tasks. I felt dependent on family and friends. For many years, I grieved the loss of my old life. I hated the new me. It was a long process to work through that grief and start to build a new life. I try really hard not to judge whether my life is better or worse. It’s just different. That helps me with the acceptance process.

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

I miss performing as a musician. I miss being able to go a whole day without needing to rest. I miss being able to trust my brain to do what I want it to.

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

Brain injury gave me the passion for a cause that was missing in my old life. This has become my life’s work. I like being able to use my experience to help other brain injury survivors. I do that through my book (To Root & To Rise: Accepting Brain Injury), my keynotes at brain injury conferences, and the volunteer group I lead (Brain Injury Voices).

Carole Starr & Book To Root and to Rise

Carole Starr – Brain Injury Survivor

13. What do you like least about your brain injury?

I dislike having to rest every day and missing out on activities I’d like to do. I never know when too much sound, light, motion, talking, or thinking is going to overwhelm my brain and require hours or days of rest to recover from.

14. Has anything helped you to accept your brain injury?

For a long time, I didn’t think I could ever accept my brain injury. It was a long process. Some things that helped me were support-groups, reading books by other survivors, counseling, journaling, crafts, learning to laugh at myself, finding silver linings, and focusing on what I’m thankful for.

15. Has your injury affected your home life and relationships and, if so, how?

For a long time, I felt like I was a burden – the one who always needed help. I had to learn to accept help from my family and friends and not resist their advice. I can now manage taking care of my home, but everything requires strategies. 67-Help_me

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

My life is much smaller. My daily activities are short and quiet. If I want to do something bigger, I know that the price will be days on the couch recovering my mental energy.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

I’ve been able to live on my own. Family, friends, and medical professionals have helped me learn strategies to take care of myself.

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

kids-hand-writing-clip-art-hand_with_pencil_5CI plan to continue writing and speaking about brain injury. I want to use my experience to make a difference. I’ve spoken at brain injury conferences and events in six states so far. I’d like to speak in all fifty! I’d also like to help other survivors create education/advocacy groups like Brain Injury Voices in other states.

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Find an activity that the new you can enjoy and do successfully. Start small, find success and build on it. Over time, small successes can grow into large achievements and lead you in directions you never imagined.

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

Find ways to connect with other survivors – either through an in-person support-group or online. Interacting with others who “get it” is invaluable.

 

Know that progress doesn’t stop after the first year or two after brain injury. Our brains are always healing. We may never be able to return to our old lives, but we can continue to grow into this new one.

Please feel free to contact me, either through StarrSpeakerAuthor.com or BrainInjuryVoices.org.

Brain Injury Voices Logo

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

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 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.

New NEWS: Preorder Prisoners without Bars: A Caregiver’s Tale

Prisoners without Bars: A Caregiver’s Tale

Did you know you can preorder your copy of my book, Prisoners without Bars: A Caregiver’s Tale?

You can! It’s easy.

You can order it in e-book form or paperback copy on Amazon.com or Barnes & Noble.com.

 

 

 

 

 

 

 

 

Just click the book cover or the title below.

Prisoners without Bars: A Caregiver’s Tale

Can’t wait for you to join our journey.

 

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 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.

New NEWS: Countdown to Prisoners without Bars: A Caregiver’s Tale

Can’t wait for the release of my book, Prisoners without Bars: A Caregiver’s Tale

 

04.29.18

184 days to the release of Prisoners without Bars: A Caregiver’s Tale

4,440 hours to the release of Prisoners without Bars: A Caregiver’s Tale

266,400 minutes to the release of Prisoners without Bars: A Caregiver’s Tale

15,984,000 seconds to the release of Prisoners without Bars: A Caregiver’s Tale

But–WHO’S Counting?

Me! Me! Me! I am!

Check out my new website:  donnafigurski.com

 

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