TBI – Survivors, Caregivers, Family, and Friends

Archive for the ‘Caregivers SPEAK OUT!’ Category

Caregivers SPEAK OUT! . . . . . Lori Strauss Heckman

Caregivers  SPEAK OUT!  Lori Strauss Heckman

(caregiver for her son, Bartholomew Wayne Nathaniel),

presented by

Donna O’Donnell Figurski

lori-strauss-heckman-caregiver-012017Three years ago, our lives were turned upside down when my then 21-year-old son had his accident. It has been a long road with many hurdles to overcome, but I am so proud of him. He is my hero and my greatest blessing. And, proof to never give up. We were told that he would probably not make it that night. We were also informed that, if he did, he would not have any quality of life. But, he proved everyone wrong! Many prayers were prayed and many tears were shed, and my son is still with us – and doing very well. The first and second photos are of my son after the accident; the third is him wearing a helmet in recovery; and the fourth photo is of him with his car. (Yes, my son is driving, and his seizures are under control.)

Meet Bartholomew Wayne Nathaniel

bartholomew-wayne-nathaniel-survivor-hospitalbartholomew-wayne-nathaniel-survivor-012017

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bartholmew-wayne-nathaniel-survivor-car

(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 SPEAK OUT! Caregiver 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!

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SPEAK OUT! . . . . . . . . . . . . . Faces of Brain Injury . . . . . . . . . Carol Starke-Pyle (caregiver of her son, Thomas)

SPEAK OUT! Faces of Brain Injury – Carol Starke-Pyle

(caregiver of her son, Thomas)

presented

by

Donna O’Donnell Figurski

Brain Injury is NOT Discriminating!

bigstock-cartoon-face-vector-people-25671746-e1348136261718It 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.

Carol Starke-Pyle (caregiver of her son, Thomas)

carol-starke-pyle-1

Carolyn Starke-Pyle – Caregiver for Brain Injury Survivor

 

This is my son’s story. Thomas was 43. He trained/rode horses for a living. He was very athletic, vivacious, funny, etc. He came to visit me one Sunday, and, as the day wore on, he became more and more delusional. I called an ambulance. My son knew his name, knew where he was, and walked to the ambulance. I followed to the Emergency Room. I was able to see Thomas twenty minutes later, as he was waiting in the cubicle. He could not talk – he babbled incoherently. He could not sit up or walk. He didn’t know me. He was admitted and was given many tests: a CT (computerized tomography) scan, an MRI (magnetic resonance imaging), and a spinal tap. The CDC (Centers for Disease Control) was called in. It was concluded that Thomas had brain damage. After two weeks, Thomas was transferred to a neurological center. He didn’t know how to swallow, he knew NO ONE, he was in a huge crib, and he was in diapers. More the-brain-hispinal taps and more MRIs. I was told his frontal lobe looked as if a bag of M&Ms had been tossed into it. Infectious/viral disease had been ruled out. It was determined that, due to numerous concussions from falls off horses, his brain had suffered too much damage – which was IRREVERSIBLE! I collapsed when his doctor said, “The Thomas you knew a month ago is no longer with us.” He continued to tell me that my vibrant son would need a nursing home for the rest of his life.

I went onto Facebook and shared my anguish and pleaded for prayers. A prayer chain encircled the globe. Meanwhile, I attended TBI (traumatic brain injury) seminars and met with social workers and more doctors to find a special nursing home for Thomas. Two months later, on my visit, his nurse grinned and said she had a surprise. Thomas was standing up! The next week, he was walking, then talking (he made little sense, but … !), then recognizing us, and then eating by himself. As I was a teacher, I chose to stick up all sorts of stimuli – photos of family, friends, pets, and horses. horse_adoptable_bay_animated_by_hikari_yumi-d5hrf17Thomas slowly improved (contrary to the opinions of ALL specialists). After four months, with short-term memory loss and some loss of intelligence, Thomas was released. I asked his doctor to explain. He looked at me and quietly said, “It is a miracle!”

My son is back to work with horses, has absolutely NO memory of the hospital, has a touch believe-clip-art-at-clker-com-vector-clip-art-online-royalty-free-qep8hi-clipartof short-term memory loss, and is as bright as he always was. BELIEVE IN MIRACLES! I am praying for YOU ALL!

 

(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 SPEAK OUT! Caregiver 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!

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Survivor/Caregiver ………… SPEAK OUT! Cyndy Davy Feasel, wife of Grant Feasel

Survivors/Caregivers  SPEAK OUT! 

Cyndy Davy Feasel, wife of Grant Feasel

presented by

Donna O’Donnell Figurski

Note: This interview is by Cyndy Feasel, the wife of Grant Feasel, who died of brain disease obtained from playing football. Some answers apply to Cyndy, and some, to Grant. I have made it obvious to whom the answer applies.

 

Cyndy Davy Feasel - spouse of Grant Feasel, a former Seattle Seahawks Center

Cyndy Davy Feasel – spouse of Grant Feasel, a former Seattle Seahawks Center

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

My name is Cyndy Davy Feasel, wife of Grant Feasel, who succumbed to brain disease.

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

Ft. Worth, Texas, USA

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

There was no single event that was responsible for Grant’s brain injury. It occurred from years of playing football. Concussions had a role.

4. How did your brain injury occur?

Playing football (See the answer to the previous question.)

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

We knew Grant had a problem about age 40.

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

Grant Feasel, former Seattle Seahawks Center diagnosed with CTE

Grant Feasel, former Seattle Seahawks Center diagnosed with CTE

None. Grant used drugs and alcohol to numb the pain.

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

Grant was never 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?

No

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

Grant had some speech difficulties. He stuttered often and repeated himself as the CTE (chronic traumatic encephalopathy) worsened. Grant also had problems with his vision and balance. His personality changed over the years. He had difficulty thinking and completing tasks. He showed impulsive behavior, irritability, and aggression towards me!

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

(No answer)

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

Cyndy: I miss my normal family life.

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

(No answer)

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

Cyndy Davy Feasel and spouse, Grant Feasel former Seattle Seahawk

Cyndy Davy Feasel and spouse, Grant Feasel former Seattle Seahawk

Cyndy: Grant died in 2012. I miss who he was when we met in 1982.

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

Cyndy: Raising awareness is helping to ease the pain of a lost life.

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

Cyndy: My family was destroyed.

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

Cyndy: I was sad for years about the life I lost in the midst of Grant’s brain damage.

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

(No answer)

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

Cyndy: I intend to be an advocate who increases awareness about concussions and brain injury.

After the Cheering Stops by Cyndy Davy Feasel

“After the Cheering Stops” by Cyndy Davy Feasel

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.

Cyndy: Educate yourself! Please ask your doctor for his or her opinion about your child’s safety before your child plays a head-banging sport.

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

Cyndy: Seek knowledge! Find a group for support.

 

(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 SPEAK OUT! Caregiver 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.

Caregivers SPEAK OUT! ……. Ann Castro Baker

Caregivers  SPEAK OUT!  Ann Castro Baker

presented by

Donna O’Donnell Figurski

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

Ann Castro Baker

Ann Castro Baker - Mother and Caregiver for Son, Jesus Castro Hanson

Ann Castro Baker – Mother and Caregiver for Son, Jesus Castro Hanson

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

Plainview, Texas, USA

Email? (optional)

sadeyez1969@yahoo.com

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 TBI (traumatic brain injury)/stroke survivor is my 23-year-old son, Jesus Castro Hanson. Undiagnosed high blood pressure was the cause of this nightmare. His injury left him with severe brain damage and a limp, and his arm is still numb and just hangs. He spent 29 days in the ICU (intensive care unit). He was in a coma for almost two weeks … and he “died” three times.

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 have been by Jesus’ side since the day it started, which was this past April 3rd. I am the main and only caregiver. I turned a year older in July, so now I am 47.

Jesus Castro Hanson - Brain Injury Survivor

Jesus Castro Hanson – Brain Injury Survivor

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

I was helping my mother care for my 84-year-old father, who has dementia. I am no longer able to give her breaks. Now we both are exhausted.

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

(No answer)

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

My son has a nurse who comes to see him about once or twice a month. But the nurse only checks vitals and asks questions.

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

I have been by my son’s side since the day it began.

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

My son was in a coma for two weeks. I had received my BA degree in ‘14, but I have had serious health issues of my own. My son was taking care of me until this happened.

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?

Jesus was a patient at a place known as Trustpoint Rehabilitation Center, and I got to stay with him. (When I stated I never left his side, I meant it!) There he received physical, occupational, and speech therapies. On the day we left, he took his first steps on his own. It was a proud and emotional moment for all.

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

Jesus needs help doing particular tasks, like holding things, opening things, and sometimes pouring things. He can dress, feed, and shower himself after relearning how to. His brain damage is severe – you can’t make instructions long and hard. Sometimes even if the instructions are short, he is still not able to do it. His short-term memory is non-existent, but surprisingly his long-term memory is on point.24-7-clockface-md

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

I hate saying “for the worse,” but my life is at a standstill. I watch over my son 24/7, with no breaks. We had been quarantined to our home for two months because of his catching C. diff (the bacterium Clostridium difficile – one of the most important causes of infectious diarrhea in the U.S.) again. He is finally done with the Dificid (Fidaxomicin – an antibiotic), so we are now beginning to go for walks – nothing too far because he will get tired and will trip a lot.

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

I miss leaving the house and not worrying about leaving Jesus alone. Now I have to make sure he is with me at all times. We can’t stay long because he either gets tired or annoyed from all the lights and noise. So I guess you could say I miss my freedom.

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

I am relearning my son. I often say I lost my son in the ICU, and this young man is Jesus in the outer shell, but on the inside, he is a stranger … who I am beginning to know. Sometimes, my son wakes up, and he seems like he is six years old – and those days can be refreshing because of his sweet innocence. Other days, he will wake up as his 23-year-old self – some days are good, while others are just plain horrible because of his temper (which is new; he never really had a temper like this before).

15. What do you like least about brain injury?

ridkzo85tI mostly have a hard time with my Jesus’ temper. I do not like arguing with my son … but, then again, it is his frustration as well. It tears at my heart. This brain injury really altered my son’s life forever. It is tough on him and on me.

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

Yes – his scar. I know that may be a weird answer, but those days when he is either clueless or starts to yell at me, I look at his scar and automatically soften. I know he doesn’t mean it. He has been through so much for his age.

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

I really do not have friends. I think some people are afraid to approach him because of his scar and his mentality now. Family members are good about it. But some people just sit back and stare. It has been different for all of us. I am still single. I recently started a long-distance relationship (very long distance, another county as a matter of fact) and it is going well. My son is happy to see the light back in my eyes.

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

Social life? What is that exactly? I go nowhere. I only go out once a month to pay bills … and then back home to my son. I did mention we are starting to go on walks, so the fresh air is wonderful for both of us.

Jesus Castro Hanson - Brain Injury Survivor

Jesus Castro Hanson – Brain Injury Survivor

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

I have faith that in ten years my son will be much better. I hope it will not happen again. I monitor his vitals three times a day. I make sure he eats right and exercises, gets plenty of sleep, and drinks enough water. I would hope that ten years from now my son will be able to be on his own. That is a long time … if he needs my help, I will be at his disposal. I gave him my word that I would not leave him until he was back to somewhat normal. He still has a long road ahead of him.

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

If there is a support-group in your town or close enough for you to go to, GO! I do not have that option, but I would love it if there were a support-group for the both of us here. If you must cry, cry in the shower … no one can tell! (Just say you got shampoo in your eyes.) Never lose your temper or let your survivor see you get that way. Even if you need to walk away for a minute or two to collect yourself, then do so and go back. Many people find God and pray – that seems to help them. SING! SING! SING! Music does wonders!

(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 SPEAK OUT! Caregiver 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.

 

Caregivers SPEAK OUT! Bob Millsap

Caregivers SPEAK OUT! Bob Millsap

presented

by

Donna O’Donnell Figurski

Bob Millsap - Caregiver

Bob Millsap – Caregiver

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

Bob Millsap

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

Glendale, Arizona, USA

Email? (optional)

robertemillsap@gmail.com

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 wife, Shelly, is the brain-injury survivor. She was 46. It happened because of a freak accident in our home – a bottle of homemade ginger-ale exploded just as Shelly walked by. It broke her nose and bruised her face, but the TBI (traumatic brain injury) symptoms did not become apparent for two weeks.

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 care on January 17, 2013. I was 45. I was then and am now Shelly’s main caregiver.

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

Yes. Our boys were 12 and 18 at the time.

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

Yes. I worked many hours. I had an employer who was not very understanding. This was very challenging. It made me re-evaluate things career-wise.

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

No. We lived at the time in Victor, Idaho (near Jackson Hole, Wyoming). We were in a very rural area. There was no family support near us.

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

My support started once my wife’s TBI symptoms became apparent.

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

Shelly was unconscious for twenty minutes.

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?

Shelly had to relearn to walk and talk. She worked with a couple of alternative
providers that we will always be thankful for. She continues to do home therapy.

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

Shelly has severe PTSD (post-traumatic stress disorder), so I help any way possible for this. I try to keep daily life as simple and consistent as possible, with constant support and advocacy. I do the driving and I manage her medications.

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

It hurts so much to witness Shelly live this every day. But I am more patient and understanding as a person. I don’t sweat the small things as I used to.

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

I miss Shelly’s being able to live life without fear.

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

I like that the deep bond in our immediate family has strengthened.

15. What do you like least about brain injury?

I dislike knowing that Shelly must face challenges every day.

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

Dealing with this has been made possible by our faith in God, our love for each other, and Shelly’s AMAZING outlook. I never see her feeling sorry for herself. It’s amazing and inspiring.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?iloveuredflyingheartsgifanimatedimagesfreedownloadbannerlove-gifphotographicclipartmobileiphoneipadscreensaverbackgroundfreeclipartanimationgifmaniahd3diloveyou

Our relationship is stronger than ever. It has really given us perspective on what is important. Our two boys are very compassionate and understanding. I am very proud of how they handle this.

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

We moved back to Arizona earlier this year, and that has been great for Shelly! It was lonely for her in rural Idaho, even before the accident. Some of her friends have been
GREAT once she got back here. Others … not so much. We try to make
sure to stay out of loud, chaotic, or unpredictable situations. We adjust to our new normal. Shelly’s TBI is truly an invisible injury, so some friends and family understand … some do not.
19. What are your plans? What do you expect/hope to be doing ten years from now?

I would love to see Shelly be able to have a rewarding, peaceful life outside of the home. She is such a kind and helpful person. I always believe there is a way that her experience with TBI and PTSD can greatly help others.

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

Shelly Millsap - Brain Injury Survivor Bob Millsap - Caregiver

Shelly Millsap – Brain Injury Survivor
Bob Millsap – Caregiver

Take one day at a time. Be patient. Ask questions of the medical and rehab communities. Search for answers. Try not to ask “Why me?” and feel sorry for yourself. Rid yourself of negative situations and negative people. Be flexible and have thick skin. Find support-groups to become involved with.

(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 SPEAK OUT! Caregiver 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.

Caregivers SPEAK OUT! . . . Lynn Sandoval

Caregivers  SPEAK OUT!  Lynn Sandoval

presented by

Donna O’Donnell Figurski

 

Lynn Sandoval - Caregiver

Lynn Sandoval – Caregiver

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

Lynn Sandoval

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

Brady, Texas, 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?

The brain-injury survivor is my husband. He was 39 years old when he had the brain injury. He was in an automobile accident. His car was hit twice, once head-on. The first car hit my husband’s car at ~95 mph. This hit spun my husband’s car around, and a second car, following the first car, hit my husband’s car in the rear at ~85 mph. My husband’s car was spun back around and finally came to a rest in the middle of the road.

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

I began care the day after my husband’s accident – when I was able to get to the hospital where he had been flown.

Were you the main caregiver?

In the beginning, my husband had hospital care in addition to mine.

Are you now?

I have been my husband’s only caregiver since he came home from the hospital.

How old were you when you began care?

I was 52.

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

No

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

Yes, I was employed. I have been able to utilize FMLA (Family and Medical Leave Act) and sick leave. I have continued working whenever I am able to.

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

I have not had any help at home caring for my husband.

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

My support began in the hospital, and it continues to this day.

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

My husband was in a coma the first few days. While he was in a coma, I stayed by his bedside and talked to him. I touched him on the areas that weren’t bandaged to let him know I was there.

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)?

My husband had physical, speech, and occupational therapies in the hospital. They continued when we got home, once I got him set up for evaluations.

How long was the rehab?

k20116138My husband is still in physical therapy, and he recently started occupational therapy again. (He had “graduated” from occupational therapy about a year ago, but his neurologist requested that he do it again.)

Where were you when your survivor was getting therapy?

I was there with my husband during the beginning therapies, but after some time, he went to the therapies alone. Now we work together on exercises at home.

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

Now my husband is able to do things for himself, but I still have to get his medications together for him every day because he doesn’t remember if he’s taken them or not.diabetes_medications

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

Since I’ve become a caregiver, I have discovered that people will withdraw from situations because they don’t understand TBI (traumatic brain injury). It has its ups and downs, but we are now seeing more positive steps and are hopeful for the future. I have found that I am more depressed and feel alone because I am more involved with making sure everything is OK for my husband, but I am learning to take time for me.

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

Life before my husband’s TBI was a lot less stressful – being able to leave the house and not worry if he is OK. Now I keep my phone with me continuously so that, if he needs something, he can call and I’ll be there for him.

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

I am grateful that I still have my husband with me.

15. What do you like least about brain injury?

I dislike the frustration and confusion that my husband feels when he is trying to remember something and he can’t.

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

Yes – support-groups and reading – and more reading – on anything and everything I can find about TBI and about what can and can’t be beneficial – not only for him, but for us and our relationship.

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

Yes. I find I am hyper-aware of anything and everything my husband does in an effort to keep him safe. The relationships with his family and friends have become nonexistent. It hurts my husband so much to feel that no one cares about him.

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

Yes. We don’t go out much anymore because my husband doesn’t like being in large, noisy crowds and because it is difficult for him to stand or walk for extended periods of time.

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

My husband’s plans are to hopefully get approved for disability insurance and then to return to his job (that they are holding for him) part-time so that he can financially contribute to our family. My plans, if we are able to get some additional income instead of just mine (which has been our income for almost the last two years), would be to find a job to use my Master’s Degree. I just completed my degree program this past year in psychology. I’d like to work with other traumatic-brain-injury survivors and help advocate for them. Here in our small town, nothing is available.

Lynn Sandoval - Caregiver

Lynn Sandoval – Caregiver

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

I would say that, despite the difficulties in being a caregiver, caregiving can be rewarding – when together you see the progress your survivor is making because of his or her drive and determination and because of the support and love that you give him or her. It is tiring, it can be frustrating, and you may feel like screaming – these are all normal responses. The key is to remember to take a moment, to try to take care of yourself (this is the hardest thing), and to believe in each other.

 

(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 SPEAK OUT! Caregiver 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.

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Caregivers SPEAK OUT! …… Raine Turner

Caregivers  SPEAK OUT!  Raine Turner,

(mother of survivor, Ryan, and author of “Only Son…Only Child”)

presented by

Donna O’Donnell Figurski

 

 

Raine Turner - Caregiver & Author: Only Son...Only Child

Raine Turner – Caregiver & Author: Only Son… Only Child

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

Raine Turner

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

Edmonton, Alberta, Canada

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?

The brain-injury survivor is my son. At 16, he was in a car accident.

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 care August 13, 2003.

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

No

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

I was self-employed and unable to manage my business.

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

Not really

Raine Turner Caregiver & Author

Raine Turner Caregiver & Author

 

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

In the hospital

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

Yes. I sat beside my son’s bed and read to him.

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?

Yes. My son had rehab both as an inpatient and an outpatient.

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

At first, self-care. Also eating, walking, etc.

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

Trick question. It made me realize what is important in life. It taught me patience, which I did not know I had.

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

I dislike my son’s loss of the chance for a normal life. I miss having a relationship for myself.

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

Nothing!

15. What do you like least about brain injury?

Only Son...Only Child by Raine Turner

Only Son…Only Child by Raine Turner

My son’s daily struggles

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

There is no choice but to accept.

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

Yes. I did not have a relationship at all for ten years. The one I had at the time ended due to stress. It’s now hard to find someone who wants to be involved with this situation.

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

Yes. But it’s getting better now with my son in school and his not living with me.

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

I hope to be on a beach!

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

Buckle up! It is going to be a long, tough ride.

 

 To learn more about Raine Turner, check out her website, “Only Son Only Child: a journey through love.” Look for her book on Amazon.

 

(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 SPEAK OUT! Caregiver 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.

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No memory of the day that changed my life

My name is Michelle Munt and this is my story about surviving a brain injury and what I continue to learn about it. This is for other survivors and their loved ones, but also to raise awareness of what can happen to those in an accident. This invisible injury too often goes undiagnosed and it can be difficult to find information about it. I will talk about things that have helped me as I continue to recover and invite others to see if it works for them too.

Everything and nothing. GM1123 😊

Bienvenue. I’m thinking this is the spot where I am to write a witty, flowery personal section that pulls you in......I got nuthin’

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