TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Traumatic Brain Injury Caregiver’

On the Air: Brain Injury Radio “Another Fork in the Road” with Lisabeth Mackall, Caregiver, Therapist, Author

On the Air: Brain Injury Radio
“Another Fork in the Road”
with Lisabeth Mackall, Caregiver, Therapist, Author

presented by Donna O’Donnell Figurski

images-1When Lisabeth Mackall opened her front door at 2:30am on January 2, 2012, it changed her life forever. She learned that her husband, Police Officer Frank Mackall, had been in a serious motor vehicle accident while on duty, and had been airlifted to a hospital. When Lisabeth opened her front door, she unknowingly entered the world of brain injury. She had to follow “Another Fork in the Road.” Lisabeth will share how she and her family picked up the remnants, pieced them together with patience, persistence, and love, and forged a new life.

Lisabeth’s book, “27 Miles: A Tank’s Journey Home

Lisabeth’s Blog

If you missed Lisabeth’s interview on “Another Fork in the Road” on May 3, 2015, you are in luck. You can listen to the archived show here.

Click the link below to listen to Lisabeth Mackall and me.

See you “On the Air!”

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

with Lisabeth Mackall, Caregiver, Therapist, Author

Click here for a list of all “Another Fork in the Road” shows on the Brain Injury Radio Network.

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

 

SPEAK OUT! Itty-Bitty GIANT Steps

Itty-Bitty GIant Steps for BlogSPEAK 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 are this week’s Itty-Bitty GIANT Steps

Anonymous (caregiver)…I almost don’t want to post this because so many spouses of TBI survivors are hurting and are facing separation or divorce, but maybe someone needs to hear it. My guy is making travel and anniversary plans. He is remembering to say, “I love you” I_love_you_by_Pambaand “Thank you.” That is such a huge step! Emotions have been very hard for him. It is difficult for him to think of how others feel. I am so blessed that this progress means so much. It may seem small to those who think of TBI as ventilators and the ICU (Intensive Care Unit), but for those of us living the long-term path to building a new normal, this is huge. I am also learning to find my new normal. I am learning to become a better person. I am learning to take a deep breath before I react, to give him room to explain, and to invite him to communicate. I am learning to give him all the cues he needs not to go into an angry self-defense mode when I need to talk about something he doesn’t want to hear. I am learning to give him safe options out instead of making him feel backed into a corner. He is meeting me half way. He is trying to hold on to those cues and to “push pause” on his response. It has been a long road, but this week I see progress. I will give part of the credit to my own personal rehab program. As a military family, we owned a home at our last duty station. When he had to leave the Army due to his TBI, we were mid-remodel. He is alone at our old house, working on finishing the work THANK YOU on speech bubble price labelson the house. Well not completely alone – he is with the family mutt. I worked with the dog, and he is a real anchor for my hubby. The dog gets noodgey when hubby’s sugar is down, restless and pacing when it is up. (The dog woke up my hubby when his sugar dropped at night.) The dog responds to my guy’s moods and anger. My husband is able to talk about the dog being skittish.progress We can talk about emotional balance in that context. He can’t yet talk about himself, but the dog is becoming his personal barometer. I know that there will be rages and shoving again. I know that he may leave us in his pain. I know that there will be days when I wonder if I should have left. I know there will be days when I want to go. I know that he may make bad choices about money. I will maintain my own bank account and resources in case I need it. I will make sure my kids and I feel as safe as we can. I will make sure that I can care for my beloved and our kids. Today – I SEE PROGRESS! Talking about all of this helps me daily as I learn to make the best of this TBI life.

 

Jeremy Dorr (survivor)…Sometimes I go for a walk in my neighborhood. It doesn’t do anything, but I can clip-art-walking-199243walk and think about things and have “me” time. gg65255707My brain is always on and seems to be working at 500% (LOL). The walk helps my brain shut off so I can sleep. I hope this can help someone out. Even if the world walks away from you, you can build back better. Staying positive has helped me, even though at times it’s hard.Dave Villarreal Award 11156302_452286041605770_1808858156142049527_n

 

Dave Villarreal  (survivor)…I received an award for 100 hours of volunteer service to the Veteran’s Administration.

 

YOU Did It!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

Trike Treks

April 9, 2015 to June 6, 2015

040915 David 1st Ride Catrike 700

David

Cumulative mileage for David                          616.2 mi

Donna

Donna

Cumulative mileage for Donna                         79.9 mi

Combined miles for Donna and David           696.1 mi

Miles to reach 5390* miles                             4693.9 mi

*done by both Catherine Brubaker and Dan Zimmerman in their cross-country rides

Cat TrikeZimmerman, Dan

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Caregivers SPEAK OUT! . . . . . Christina WIlliams

Caregivers SPEAK OUT! – Christina Williams

by

Donna O’Donnell Figurski

Christina WIlliams1. What is your name? (last name optional)

Christina Williams

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

Pine, Colorado, USA

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

The TBI survivor was my fiancé. His TBI was caused by a motor vehicle accident. He was 37. I want to add that it was in 2008, so it happened more than six years ago.

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

I was at the scene of the accident. I was his main caregiver; I still am now. I began care as soon as I could. I was 47 when the accident happened.

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 TBI? If so, were you able to continue working?

I worked with my fiancé in our own business – building custom homes, decks, basements, bars, etc. We also designed and created log furnishings on the side. When he got hurt, I was unable to continue working. I lost my job because I assisted him. We lost both businesses.

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

No

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

Never.

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

Yes, my fiancé was in a coma. I sat at his bedside, cried, and prayed a lot. I NEVER left the hospital for 72 days. I finally did after he was transferred to the rehab hospital.

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 this was happening?

My fiancé was accepted to Craig Hospital in Denver, Colorado, (one of the top ten rehabilitation facilities in the US for spinal cord and brain injuries) for intensive physical, occupational, and speech therapies. He also had group therapy, recreational therapy, and swim therapy. I was with him every day. I had to be there before breakfast to help dress and feed him and to get him to his daily “classes.” He remained an inpatient for three and a half months. He then became an outpatient. I took him to therapy three times a week at first. Over time, it decreased to one or two times a week. After about sixteen months, we no longer went. We still continue to go back to Craig Hospital for specialized therapies for issues he has had since the accident. The last one was vestibular therapy for vertigo symptoms. But, they couldn’t treat it, so they worked on his balance issues.

11. What problems or disabilities of your TBI survivor required your care, if any?

He has epilepsy due to his TBI, so he requires supervision 24/7. He can never be left alone. Because of seizures and balance issues, he has frequent falls and injuries that require medical attention and trips to the Emergency Room. He can’t drive or work. He requires prompting for many of daily living skills, including hygiene, which is a huge issue.

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

Both our lives have changed drastically. Our lives are worse, since we can’t have the “normal” life together that we expected. We now realize that we took our lives for granted. Buying a home or a new car and taking vacations are no longer possibilities in our lives.

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

I miss the freedom and having hope for the future.

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

I enjoy spending time with him every day. Every day is NOT “sunshine and roses,” but we make the best that we can out of every day. He is simply amazing. I look at him and watch him in awe, as he does whatever he does. I have a saying: “Let’s just hope today is better than yesterday.” It helps us focus on the positives in every day.

15. What do you like least about TBI?

I dislike that the TBI has destroyed such a good person and his future. We also lack the money and the ability to do whatever we want.

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

Yes. God.

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

We were officially engaged two days before the accident. We were SO in love and excited to be planning our future. Since his injury, his emotions (or I should say “ his lack of emotions”) and his poor judgment have caused us many, many problems.

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

We have no social life. ALL our “friends” vanished after he was hurt. Our social life is whatever we do in our day. When he has a doctor or therapy appointment, we plan a whole day in the city together.

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

I don’t have any hopes or plans anymore. We just take it a day at a time. In ten years, I imagine that we will still be doing what we’re doing now, but perhaps in a different house.

20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?

Turn to Facebook for support, especially the TBI pages. You may not know the people, but they have been a constant and great support not only to me, but also to so many others – survivors, caregivers, and their families and friends. It’s nice to read the stories of others and to share comments and advice. When my fiancé was hurt, I wasn’t using Facebook. It would have been so nice just to know that I wasn’t alone in my journey. Facebook is my “human” outlet for support. I have also come to find out that I can help others. That is more rewarding to me than I can say.

I think what I would want people to know that they aren’t prepared for is that it is VERY common for TBI survivors to start having seizures a year or so after the injury. It was something we weren’t prepared for, or even thought could happen. He was on anti-seizure meds while in rehab, but there was “no seizure activity.” So, they took him off the medication, and I thought it would never be a concern. Boy, was I wrong!Christina Williams 2012

Thank you, Christina, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

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

(Photo compliments of Christina.)

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


Speaking Engagement . . . . . . . “Prisoner Without Bars . . . . . . . . . . . A Caregiver’s Story”

YOU ARE INVITED!

 

putthis_on_calendar_clip_artWhen Donna’s spouse, David, did one chin-up too many, he had a brain injury (BI), and Donna became a caregiver. David had three brain surgeries within two weeks. Donna signed on the dotted line for each of them – probably the hardest thing she has ever done in her life. Donna will share her story, “Prisoner Without Bars: A Caregiver’s Story” about David’s unexpected recovery and how she and David are making this “new normal” work for them. She will also share tips and offer David Figurski 2004 Pre-Brain Injurysuggestions from what she learned along the way.

It’s been a long, bumpy road for both David and Donna, but they travel that road together.

Come One! Come ALL!

Donna and David Post-Brain Injury  2010

Post-Brain Injury 2010

 

What:        Donna will share her experiences with caregiving and will offer tips based on what worked for her. Donna  will also share snippets of her book, “Prisoners Without Bars: A Caregiver’s Memoir,” which is searching for a publisher.

Why:        Hopefully, Donna’s experiences with caregiving will help others who might find themselves in this position

When:       Monday, April 6, 2015

Time:         1:00 to 2:30pm

Where:      Desert Palms Presbyterian Church
13459 W. Stardust Boulevard
Sun City West, Arizona 85375-2548

(Clip Art compliments of Bing.)

(Photos compliments of Donna)

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

SPEAK OUT! Itty-Bitty GIANT Steps

 

Itty-Bitty GIant Steps for BlogSPEAK 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 are this week’s Itty-Bitty Giant Steps.

green-tea-cup-hiAdrienne York Campbell (survivor)…My darling husband went to the grocery store and brought home Lipton Green Tea! I am completely addicted, and he knows it. He’s always doing things to brighten up my life. I love that man!

Timothy Guetling (survivor)th

I am at one of the many Starbucks in my area. The WiFi is free. I’m communicating with you all. And that is wonderful.

Patrick Hannan (survivor)…Well, waking up is always good. foot_careWhat really led me to believe that it was going to be a positive day was that I put both feet on the ground and stood up. There have been many times in past when I was unable to do that.

Kerry Mischka (survivor)…I woke up again and I was breathing! waking-upDoes it get any more positive than that?

Snoopy Snowdog

Snoopy SnowDog

Susan Paynton Thompson (caregiver)…I showed my husband a cute Snoopy snowman someone had posted on Facebook. So, he took a tiny Snoopy figure outside on our deck and made me one! I am not sure that he would have done this pre TBI, but it was quite loving. It sure did make me smile!

 William Turner (survivor)hospital11-240x229

I got my workout for the day. The walk through the hospital took a lot out of me. (The nurses got me a wheelchair to sit in.) No pain, no gain.

laundry-clip-artDana Wiedenmann (survivor)…I have to go to a laundromat. It’s hard for me.

 

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

Caregivers SPEAK OUT! . . . . . Karie Collins

Caregivers SPEAK OUT! – Karie Collins

by

Donna O’Donnell Figurski

 

Karie Collins - Caregiver

Karie Collins – Caregiver

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

Karie Collins

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

Green River, Wyoming, USA     mrskarie@q.com

3. What is the TBI survivor’s relationship to you?

The TBI survivor is my husband, Danny.

How old was the survivor when he/she had the TBI?

He was 50.

What caused your survivor’s TBI?

Danny was in a golf cart accident. The foursome he was in had finished golfing, and they were racing each other back to the truck. The wind blew the driver’s hat off, and the driver made a sharp U Turn to go get it. Danny was the passenger. He hit his head on the cart and fell out. Danny landed on his feet, but he instantly fell face-first onto the pavement. They had been drinking all day.

4. On what date did you begin care for your TBI survivor?

Karie Collins - Caregiver Danny Collins - TBI Survivor

Karie Collins – Caregiver
Danny Collins – TBI Survivor

Danny’s accident was on August 16, 2014. He was taken to our local hospital by ambulance. He was then airlifted to Salt Lake City, Utah. He came home from the hospital/rehab on September 24. I was with him from the beginning, but I took on the role of sole caregiver on the 24th, when we came home from the University of Utah Hospital/rehab.

Were you the main caregiver?

Yes

Are you now?

Danny is high-functioning now. He has returned to driving and working, so the need for a full-time caregiver has mostly passed. I still help him manage and remember things as needed. We remain a team and have been for over 30 years.

How old were you when you began care?

I was 50.

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

Our children are all grown now. They are on their own, except for our youngest son. However, Danny’s mother had to be placed in a care center at the beginning of September – while we were still in the hospital. So, we began caring for her, as Danny is her only living biological child.

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

I was in the process of making a job change – certifying to be a substitute teacher. I opted to put that on the back burner to be able to care for the love of my life. Now that Danny is doing so well, I am updating my résumé so that I can return to work. We need additional steady income to get our financial security back.

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

I did have some help off and on – from our children and from some friends as well. They were good about giving me breaks. They came to be with Danny or even sometimes to take Danny “out” so I could get things done at home. (Danny always wanted me to be right by him or to be playing cards with him.)

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

My support began immediately. Actually, you could say that my support of Danny began on April 7, 1985, when we married. 😉

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

Danny was in a coma for several days and in a state of confusion for several weeks after. Overall, Danny spent two weeks in the Neuro Critical Care unit. He then spent another three and a half weeks in the rehab unit. The first few days were low to no contact days, so I mostly hung out in the waiting room with family and friends and prayed. After that, I was pretty much in his room with him. I continued to pray. Also I asked questions and learned all I could to support and assist him.

Karie Collins - Caregiver Danny Collins - TBI Survivor

Karie Collins – Caregiver
Danny Collins – TBI Survivor

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)?

In addition to the three and a half weeks of physical, occupational, and speech therapies in the hospital, Danny continued with all three therapies on an outpatient basis at our local hospital after we came home. He finished with physical therapy in December. He “graduated” (that’s how he puts it) from speech and occupational therapies on February 23rd.

How long was the rehab? Where were you when this was happening?

During outpatient therapies, I would drive Danny to and from his appointments. I did this until the end of January, when Danny’s driving privileges were restored. Usually I sat and waited for him, but on some days, I took advantage of the three hour sessions to go run errands or do other tasks. Occasionally, I would go visit the teachers and students at the school I used to work at. It was my “therapy.”

11. What problems or disabilities of your TBI survivor required your care, if any?

Well, Danny couldn’t drive, so I drove him. I handled and organized his medications, and initially I gave them to him. Now I load his pill organizer, and he takes them. Danny was diagnosed with diabetes during all of this, so monitoring his blood sugar was my task at first. He now takes care of it. Other difficulties Danny has are looping, fixation, frustration, outbursts, over-stimulation, anger, anxiety, etc. He has no filter; he has difficulties with memory loss; and he is easily tired. I/we deal with it as it comes along. Through therapy, we have learned some new coping skills and some strategies to use to compensate for what was damaged and lost. Danny has always been very independent and determined, so while in the beginning these qualities caused great stress, once the corner was turned to where Danny began to understand he had had a serious injury, they became the driving force to his recovery. He HAD to drive, and he HAD to go back to work. If that meant therapy, meds, and no drinking, then that’s what had to be done – even if he didn’t think he needed it.

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

Our life changed dramatically. We went from being spontaneous and outgoing to being very routine-oriented. Danny is not as affectionate as he once was, nor is his tolerance for things and people what it was. He says what he thinks, no matter whom it hurts. Some things are better, as we have a new appreciation for life, our family and friends, and the blessings of greater faith. For a while, things were bad, but thankfully, they improved. While I don’t wish this on anyone, I wouldn’t trade what we have gained for anything.

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

I miss Danny’s affection. In April, we will have been married 30 years, and I miss my affectionate man. Fortunately, more and more now, he is showing affection to our grandsons, so I am hopeful his affection will come back to the kids and me with time. Somethings, I think, are a matter of relearning them.

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

I enjoy how much closer my family has become. I also enjoy how my faith and testimony have grown. I have become calmer and more tolerant of things because in the big picture WHAT REALLY MATTERS?

15. What do you like least about TBI?

I dislike how one moment things seem fine/normal, and then, out of the blue and for no real explainable reason, it all gets turned upside down and inside out.

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

Yes. Love, faith, and reality. I mean, it is what it is. You either accept it, move on, and make the best of it, or you don’t. If it were cancer or some other disease, you would do all you could to overcome it. No different here.

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

How can it not? Some struggles exist because of Danny’s difficulties, so we have learned to choose our battles. We also choose to accept that life changes and people change, and so we choose to accept Danny’s injury and to try to understand all that we can. Overall it has brought us closer together and has given us a new respect for life and how truly fragile it is.

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

This all changed Danny in ways he doesn’t understand. He acknowledges that he has a brain injury. But, he thinks he is the same as he was before the accident, so he thinks life should be as it was before. You see, Danny was very social and what I would call a “social alcoholic.” So much of what we did socially was tied to drinking – drinking to get fall-down drunk. So, while we have still socialize with our friends, it is different because Danny cannot drink (or at least shouldn’t). So far, he hasn’t, but he says that it isn’t as much fun because he cannot drink.

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

Wow! Ten years from now…I hope that Danny has better clarity, that he can show affection again, that he can again filter what not to say in certain situations, and that financially we are again back to where we were headed, so we can travel and enjoy time with each other and with our family and friends.

20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add? 

First, take time for you – no matter what. Even ten minutes a day can make a huge difference.

Ask for help. On some of the worst days, I reached out to say I need help. I was never let down. Someone always came through. Even if it was just a phone call, it helped.

Find and join a support-group for yourself. They will get it when no one else does.

Cut yourself some slack. It’s okay to be mad, cry, grieve, and mourn. We always think we have to be brave or strong, but sometimes we NEED to let it out and let go.

Try to stay positive.

Choose your battles wisely. At the end of the day, this is what will be most important.

You can only control so much. Give your survivor information and your opinion or reason, and then let him or her decide things as much as you can. Where respect is given, respect will be returned.

Karie Collins - Caregiver

Karie Collins – Caregivers

Lastly, never give up. There is always HOPE.

 

Thank you, Karie, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

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

(Photo compliments of Karie.)

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

Caregivers SPEAK OUT! . . . . . Jessica Fell

Caregivers SPEAK OUT! – Jessica Fell

by

Donna O’Donnell Figurski

 

Jessica Fell – Caregiver

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

Jessica Fell

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

Mobile, Alabama, USA     chrissmomi05@gmail.com

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

The survivor was my boyfriend of four years, now my husband. We just got married on New Year’s Eve, his birthday.
 Daniel was 29 when he got his TBI. He was driving to work on his motorcycle, and a truck turned into a driveway without yielding. Daniel had no time to stop, slow down, or swerve. He collided with the truck.

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

I never left the hospital. There wasn’t a single day in the two months Daniel was in the hospital that I didn’t stay the night with him. Initially I was waiting for him to “wake up” from his coma. I am, and have been, Daniel’s only caregiver. We lived together with my two little girls. I stopped working to take care of him at home, instead of having him go to a rehab hospital. I was 27 when he was injured. I turned 28 while he was in the hospital.

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

I was caring for my two children. I still do now.

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

I continued to work until a few days before Daniel was released from the hospital. I do not work now.

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

I had no help at all. Daniel’s family came into town every weekend, but they did not stay at our home.

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

Immediately

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

Daniel was in a coma for nineteen days. I stayed by his side constantly waiting for him to wake up.

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 this was happening?

Daniel had rehab in the two-month period that he was in the hospital. He only had physical therapy afterwards – once a week. He has not yet started any other therapy.

11. What problems or disabilities of your TBI survivor required your care, if any?

The only thing Daniel needs me for now is driving. I did have to help with his walking, showering, and getting dressed. But, he’s fully capable of those things now.

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

I have had to grow up a lot and learn to be more patient. It’s not better because I would like to be working now and to still be doing outgoing things with him. But, I am hopeful that he’ll get back there soon. It’s not worse because our relationship is so much better than it’s ever been.

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

I miss Daniel’s crazy, spontaneous personality. I miss his being so full of life. He’s still very funny, and he loves to laugh. But, he can’t hang for long, and he gets very anxious and worried so easily.

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

I enjoy that our loyalty to each other is so much stronger. I am happy that Daniel has calmed down some.

15. What do you like least about TBI?

I dislike the anxiety Daniel has, his memory’s not being as good, and sometimes his temperament.

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

I believe I have come to accept Daniel’s TBI through God and family and by trusting each other. I’ve come a long way.

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

Daniel and my mom no longer speak because she doesn’t understand. It makes it difficult for me to balance their time together and ours.

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

I can’t leave the house without worrying that Daniel is going to be OK or wants me to come home. I feel guilty that he’s not with me.

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

I hope that we are both back at work and in our own home, which we hope to purchase one day. I hope we have a child together.

20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add? 

Jessica Fell

Jessica Fell – Caregiver

My main advice is to never, ever give up. Don’t let TBI take away your life. Don’t let it destroy your relationship. It shouldn’t just be the survivors who are forced to change. The survivors might not have control, but you can change how you handle yourself when it comes to certain things. We have to adapt to this new person and learn to love him or her again. The survivor deserves love and needs it. Be dedicated. Be a believer in yourself and in your survivor because spirituality does take you a long way in this journey. God puts you in situations for a reason – to learn from them. Find out your reason; learn from it; let go and let God. He will get you through any situation he places you in. Trust and believe in that and in yourself.

 

Thank you, Jessica, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

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

(Photo compliments of Jessica.)

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

 

Caregivers SPEAK OUT! . . . . . Trisha

SPEAK OUT! – Trisha

by

Donna O’Donnell Figurski

 

Trisha

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

Trisha

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

Rural western Oklahoma, USA

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

My son fell asleep while driving to work. The pickup left the roadway and rolled several times, and he was thrown through the window. It was ten days after his 20th birthday.

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

I began immediately – the morning of November 3, 2011 – as soon as I got the phone call from the Highway Patrol telling us what had happened and that my son was being medevacked to a hospital in Oklahoma City. I called my husband; he left work, and we headed that way. I stayed in Oklahoma City the entire four months. I am still his main caregiver, but my husband, my son’s girlfriend, and my other sons help.

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

I had two younger sons, ages 16 and 11, at home. (They’re still at home.) My stepdaughter, her husband, and their four children had just moved in with us about three weeks before the wreck. They moved out about three weeks after we came home from the hospitals. And I was about six months pregnant.

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

I was running my own photography business, and I still am.

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

Every church, countless people in our area, and family not only prayed, but also made it financially possible for me and my sister to stay in Oklahoma City the entire time my son was in the hospitals and also for my husband to be there whenever he had time off work. My husband’s bosses also were also able to get him extra time when it first happened, so he was able to stay for several weeks before he had to go back to work.

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

Immediately, at all the hospitals

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

Yes. My son was in an induced coma. We stayed by his side and prayed, until they’d make us leave at night. Then we’d be right back in the morning.

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 this was happening?

My son was at Oklahoma University Medical Center first. Then he went to Select Specialty Hospital for a few weeks. From there, he was at Valir Rehabilitation Hospital from the middle of December until we came home in February. He had about 8 weeks of therapy at Elk City Hospital as an outpatient after we came home. Since then, we’ve continued doing therapy ourselves at home. I was with him the entire time, except at night, when we’d go to the motel.

11. What problems or disabilities of your TBI survivor required your care, if any?

Trisha's Son after TBI

Trisha’s Son after TBI

My son suffers from short-term memory problems, lack of balance and coordination, problems with fine-motor skills, and incontinence. One of our biggest battles has been depression. He is in a wheelchair, but he is able to use a walker for short periods of time.

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

Everything is pretty much centered around my son. He can be home alone, but only for a couple hours at a time. If I have to leave, I need to make sure either someone else is here or will be here.

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

The active and outdoor lifestyle we had

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

This is actually a difficult question to answer. Post-TBI for us is also the start of our daughter’s life. She was born one week after my son and I got home from Valir.

15. What do you like least about TBI?

Even though it is going on three years, there are still times that I feel like it’s a bad dream, and I’m waiting to wake up. I’m distressed by the fact that my son had a ton of friends before, and now he will go weeks, sometimes months, at a time without seeing or hearing from any of them.

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

I honestly don’t know if I have actually accepted it yet. To me, acceptance pretty much means we give up, and he hasn’t given up. In fact, this week, for the first time ever, he has walked on a treadmill. For the first time since the day before his wreck, I saw him make full strides with both feet! He didn’t do his normal “step with one foot, catch up with the other” like he does when he uses his walker.

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

Yes. We had to remodel one of our bathrooms to make it accessible for a wheelchair. His younger brothers help out with some of his needs.

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

My son and I both have friends who no longer come around. People, including his own grandfather, get upset with us because he refuses to go to their houses. Yet, their homes don’t have access for a wheelchair – let alone have a bathroom that he could get into if needed.

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

I take things day-by-day, with a lot of prayers going up.

Trisha's Son before TBI

Trisha’s Son before TBI

20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?

Fight for answers from all doctors or “teams.” Insist on seeing each one. When the accident first happened, my son had “teams” of doctors for his different injuries. We never saw the neurology team. They always came through before we were allowed into his room. His brain injury was made out to us like it was a secondary injury – not that bad. In reality, it was his worst injury, but that’s not what we were told.

 

Thank you, Trisha, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

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

(Photo compliments of Trisha.)

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

Caregivers SPEAK OUT! . . . Charline

SPEAK OUT! – Charline

by

Donna O’Donnell Figurski

 

Charline

Charline & Rick April 2012

 

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

Charline

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

Abilene, Texas, USA

3. What is the TBI survivor’s relationship to you?

He (Rick) is my husband.

How old was the survivor when he/she had the TBI?

52

What caused your survivor’s TBI?

The TBI was caused by an aneurysm that started to hemorrhage. Two days after the surgery to repair the aneurysm, he had a major stroke.

4. On what date did you begin care for your TBI survivor?

September 2013

Were you the main caregiver?

No

Are you now?

Yes

How old were you when you began care?

49

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 TBI?

Yes

If so, were you able to continue working?

No. My husband and I were snowbirds at the time of the TBI. We worked on the Gunflint Trail in Minnesota during the summer and at an antique store in Texas during the winter. Rick is a Minnesota native, and I am a Texan. He was flown to Minneapolis, so I was not able to continue my summer job. We came back to Texas in June 2014.

7. Did you have any help?

Yes

If so, what kind and for how long?

My two daughters and their families live here and are able to come and relieve me for a few hours a week.

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

Immediately

9. Was your survivor in a coma?

Yes. Rick was in a medically induced coma.

If so, what did you do at that time?

I spent every day in the Intensive Care Unit talking and reading to Rick. He had family that came daily to visit as well.

10. Did your survivor have rehab?

Yes

If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)?

Rick was in a nursing home between the hospital and rehab. He had to relearn everything. He had physical therapy, occupational therapy, and speech therapy when he was moved to the rehab facility.

How long was the rehab?

3 months

Where were you when this was happening?

I attended most of every therapy session and doctor visits. Rick responded better to me than to anyone else.

11. What problems or disabilities of your TBI survivor required your care, if any?

His memory was severely damaged. He can never be left alone. He is also incontinent. (I have him on a bathroom schedule. If I ask him if he needs to go, he always says no; but if I tell him it’s time to go, he does.) His appetite is great.

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

I can’t say that my life is better or worse. I can say that it’s different.

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

I miss the freedom to be able to just “go.” My husband and I were very active. We hiked, canoed, fished, shopped, and worked. I miss my jobs and the people I worked with.

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

I enjoy the brief moments of lucidity.

15. What do you like least about TBI?

The lack of “me time.” I hit the floor running every day – taking care of his needs and taking care of all the household duties.

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

I am still learning how to accept my new life.

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

Yes. I sometimes feel like a prisoner. I can’t just go shopping for groceries anymore. If I take him with me, he gets distracted and puts everything in the basket or tries to eat it before buying. I usually have to get one of my kids to come and sit with him so I can do any errands.

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

Yes. I don’t have a social life anymore.

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

I hope and pray that in ten years we will be a little more active.

20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add? 

Charline image

Charline & Rick July 2014

My advice is to stay strong. Take time to care for yourself.

 

Thank you, Charline, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

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

(Photo compliments of Charline.)

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

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