TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘TBI Caregiver’

“Another Fork in the Road” . . . Brain Injury Radio Network . . . Rosemary Rawlins: Caregiver & Author

YOU ARE INVITED!

putthis_on_calendar_clip_artIt only takes a split second for lives to change forever. Rosemary and Hugh Rawlins lives were turned upside down when Hugh was struck by a car during an afternoon bike ride. Rosemary was immediately thrust into caregiver mode as Hugh was reduced to helplessness. Rosemary’s book, “Learning by Accident: A Caregiver’s True Story of Fear, Family, and Hope,” details, in an easy-to-read story, how she and Hugh, with their two daughters, picked up the broken pieces of their lives and glued them back together.

          Come One! Come ALL!

What:        Interview with Rosemary Rawlins, caregiver of her husband, Hugh Rawlins, and Author of “Learning by Accident: A Caregiver’s True Story of Fear, Family, and Hope”

Rosemary & Hugh Rawlins after TBI

Rosemary & Hugh Rawlins after TBI

Why:        Rosemary will talk about how her life and those of her family changed forever and how they are picking up the pieces and rebuilding new lives after TBI.

Where:     Brain Injury Radio Network

When:       Sunday, January 18th, 2015

Time:         5:00p PT (6:00p MT, 7:00p CT, and 8:00p ET) 90 minute show

How:         Click: Brain Injury Radio Network

Call In:    424-243-9540

Call In:     855-473-3711 toll free in USA

Call In:    202-559-7907 free outside US

or SKYPE

Learning by Accident: A Caregiver’s True Story of Fear, Family, and Hope

Learning by Accident: A Caregiver’s True Story of Fear, Family, and Hope

 

 

If you miss the show, but would like to still hear the interview, you can access the archive on On Demand listening. The archived show will be available after the show both on the Brain Injury Radio Network site and on my blog in “On the Air.”

(Clip Art compliments of Bing.)

(Photos compliments of Rosemary Rawlins.)

SPEAK OUT! Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

Itty-Bitty GIant Steps for Blog

 

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

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

Sara Catherine Birch (caregiver)…An Itty-Bitty Giant Step this week – hubby is going back to his old job on Thursday. He will try a short shift to see if he could build up his hours slowly and get back his deputy title. Fingers crossed. His boss is keeping his hours low for the first couple of weeks so that his schedule won’t affect our benefits and he won’t have to worry about money.

Sara Catherine Birch (caregiver)…I’m very proud of hubby. I came home from work yesterday to find out how hubby’s looking after both kids (for the first time) went. As I walked in the door, I could hear the washing machine going. He had gotten both kids to bed, emptied and refilled the dishwasher, emptied the tumble-dryer, and put a wash on. Yeah, he definitely deserved the Domino’s pizza I was carrying.

Michelle Lee Bonnenfant (survivor)…Today I went to Walmart with my daughter and husband, despite the setbacks caused by my PTSD (post-traumatic stress disorder). I only panicked once! I got separated and forgot where I was in the store. Thank god, I had my cell phone! Small step, but I’m trying. Any store is bad for me. I can’t believe that I did a big, busy store! Needless to say, I’m exhausted and have a pounding headache. No pain, no gain!

Sidney Chronister (survivor)…I’m feeling super PROUD of myself. Today has been the first time ever (since my TBI four years ago) that I managed to cook all by myself. I even read a recipe all by myself (LOL)! I’m progressing very slowly. Let’s just hope I can do the same thing tomorrow – or in a week. Let’s pray for that. Thank you all once again for all the ENCOURAGING words you give me DAILY (especially in the days of bad weather). May God give us all more strength (He knows we have it), more patience (we NEED IT), and less crazy anger-outbursts. God bless you all, and have a blessed New Year’s. Happy 2015!!!

Ellie K. Payton (caregiver)…Today Claus Nowell, my 20-year-old, 10-months-post son, took his first steps in a walking frame. There were nurses and therapists “acheerin’.”

This is a huge Itty-Bitty Giant Step – one I’ve been waiting for with so much hope.

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

SPEAK OUT! Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

Itty-Bitty GIant Steps for Blog

 

 

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

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

Bart Boughner (survivor)…I found my old horse this past month. I haven’t seen him since 2004. Today (yeah!) I remembered I can scan pictures to send to the new owner. Yesterday I tried the camera – not so good. I love days like today!

Bart Boughner, 2 months after TBI, poses with his horse.

Bart Boughner, 2 months after TBI, poses with his horse.

Ever So Dirty, aka Hannah and Rightly Zipped, aka Bubba

Ever So Dirty, aka Hannah and Rightly Zipped, aka Bubba

The big one is my old mare, Ever So Dirty, aka Hannah. She had two babies for me. The one I just found is the little one, Rightly Zipped, aka Bubba.  I still have the sister, and – funny thing – they were born on the same day, two years apart, and with the same parents.

Olivianjeana Collazo (caregiver)…Our biggest accomplishment has been finding fish oil and other things to help our son with his brain injury, which happened in July. All that the doctors could say was the worst. I can’t wait to show them our son now. He is doing half the things they said he wouldn’t! Thanks for reading.

Peter Cornfield (survivor)…Peter uses innovative measures to move a basket of firewood to the fireplace using only one hand. See his inspirational video on You Tube. Moving Wood With My Stick.

Jamie Fairles (survivor)…Hi, Donna. As of yesterday, I’m off for four weeks from my B SW (Bachelor of Social Work) field practicum placement until my second term begins in the new year. I have the rest of this practicum to finish, a second field placement, and only two more full courses until I’m a social worker!

 Heather Sivori Floyd (caregiver)…BIG NEWS to share! Kinda nervous to share but really excited! Had a meeting with a few people from Brain Injury Alliance of Kentucky today. They have written something for bicycle helmet legislation for children. It will be called TJ’s law!! Very exciting! Now to get the right people involved to get this thing passed.

William Jarvis (survivor)…Donna, a big step for me was moving. Five months ago, I thought it would be impossible, due to my TBI and walking with a cane. However, I am now in my new home in Myrtle Beach. I got a lot of support from family and friends. You can do more than you think! Don’t be afraid to try things.

Debbie Madison (survivor)…I went to my first Christmas party, and I didn’t hide in the bathroom! It wasn’t so bad, and I had a nice time with my husband.

Debbie Madison (survivor)…I finished the shopping, and I sent out cards without losing addresses or the list.

Julie-Ann Manners (survivor)…It’s Wednesday here in Oz (Australia). I just got out of the hospital on Monday. [I was in due to my epilepsy from my ABI (acquired brain injury).] And this is HUGE FOR ME. I have finally been put on the list for rehab for fine motor control, speech, walking, reading, and writing!! Eventually I will be able to start being me again!! I’m so super excited!! My injury happened this year in February, and I have had no help, and now after Christmas, I am finally going to be able to get some! YAY!!!!

Michael Montepara (survivor)…Okay, here’s one of my Itty-Bitty Giant Steps: I am thankful that this week I did not have to sleep in my truck in the cold. AMEN.

Shanna Wolf Heart Powell‎ (survivor)…I accomplished grocery shopping tonight with out a break down, except for the pig head they were selling at the store!!! I broke down and cried in Walmart!!!

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

On the Air: Brain Injury Radio Interview with Christian Jungersen author of “You Disappear”

On the Air: Brain Injury Radio

Interview with Christian Jungersen

author of “You Disappear”

images-1IMPORTANT NOTE: Because of technical difficulties with sound, the interview starts at 14:20. Just drag the audio to that spot and start listening.

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You Disappear by Christian Jungersen

Folks, I had an amazing interview with Christian Jungersen, author of “You Disappear.” Christian’s story jumps on the rollercoaster life of a man who has a brain injury. Frederik’s slow-growing tumor is wreaking havoc in his and his family’s life. The book is a great read. The interview is a great listen. Don’t miss out on either.

Christian’s very poised and professional interview was conducted at 2:00 to 3:30 am from his home in Malta, an island in the Mediterranean Sea.

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Christian Jungersen

You can get to the interview by clicking the link. (Wait a few seconds for the audio to start.) Because of technical difficulties with sound, the interview starts at 14:20. Just drag the audio to that spot and start listening.

If you missed the show, don’t fret. You can always listen to the archived show. I’ve included the link below.

Please SHARE!

I hope you’ll tune in to my show, “Another Fork in the Road,” which airs the 1st and 3rd Sunday evenings of every month. The show starts at 5:00p Pacific Time and runs for 90 minutes. On the fifth Sunday in a month, Julie Kintz, Host of “Quantum Leap,” and I team up to cohost a show called “Another Quantum Leap in the Road.”

REMEMBER: Because of technical difficulties with sound, the interview starts at 14:20. Just drag the audio to that spot and start listening.

See you “On the Air!”

Interview with Christian Jungersen

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

“Another Fork in the Road” . . . Brain Injury Radio Network Interview with Christian Jungersen, author of “You Disappear”

YOU ARE INVITED!

putthis_on_calendar_clip_art

Christian Jungersen, author of “You Disappear” takes his readers on the twisted journey of Frederick, a headmaster at a prestigious school; Mia, his wife and a reputable schoolteacher; and their teenage son, Niklas as they are caught in the web of brain injury.

 

Come One! Come ALL!

What:        Interview with Christian Jungersen, author of “You Disappear”

Why:        Hear Christian talk about his book, “You Disappear” and take a glimpse into the life of a TBI Survivor and his family as they maneuver through the TBI maze.

You Disappear by Christian Jungersen

You Disappear
by
Christian Jungersen

Where:     Brain Injury Radio Network

When:       Sunday, December 7, 2014 (Special Announcement: It’s my birthday. Bring thumbnail-1

Time:         5:00p PT (6:00p MT, 7:00p CT, and 8:00p ET) 90 minute show

How:         Click: Brain Injury Radio Network

Call In:    424-243-9540

Call In:     855-473-3711 toll free in USA

Call In:    202-559-7907 free outside US

or SKYPE

If you miss the show, but would like to still hear the interview, you can access the archive on On Demand listening. The archived show will be available after the show both on the Brain Injury Radio Network site and on my blog in “On the Air.”

(Clip Art compliments of Bing.)

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

SPEAK OUT! Itty-Bitty GIANT Steps

Itty-Bitty GIant Steps for Blog

 

 

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

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

Roy Anthony (survivor)…I broke off a toxic relationship that has taken a good part of me. Now is the start of gaining my life back.

Wendy Coulter (survivor)…I went outside into my front yard without a cane! First time since the accident in March!

Sherrie Crusha (survivor)…I put in a back door with only hand tools.

10678844_389594007862776_6836148097400106876_nLaura Doughty (survivor)…Saved a dog. He is a stray. Really cut up. Scares really easily. No doubt he has been abused. He needs love and care. It was the right thing to do. He is a boxer – named after the boxer, Jack Dempsy. Dempsy is happy here.

Dunton IV, George FrederickGeorge Frederick Dunton IV (survivor)…My big accomplishment for the week was being able to babysit three very young kids for 3 hours.

John Hatten (survivor)…Well, Donna, I’ve been working with HOPE Beyond Trauma (www.HOPEBeyondTrauma.com) to build a new service for Survivors of Brain Injury, an online teleconference/teleseminar/support group. We plan on starting before February (the gods being willing). It’s a pretty big step for a survivor of a serious brain injury.

Kelley (survivor)…My big step is helping others. We all were snatched from death for a reason. My reason is to help others. My estranged, alone father needed to be put into a home and get care. I found him one of the best in our area that takes a couple of Medicaid patients. He gets the best care, and I can visit him almost every day, since I put him so close to me. He has dementia, and so do I (but not as bad as he does). I am able to give him cognitive exercises, since I had rehab for over a year and know them very well. His nurses say he’s getting better all the time. I forgave him and am his only guest and caregiver. What I’m accomplishing makes me feel good.

Carmen Gaarder Kumm (survivor)…Today’s test – I passed with flying colors. My car slipped into a ditch. I didn’t panic, couldn’t get out, didn’t panic. I called my husband. He got me out! I didn’t cry; I didn’t yell; I kept my head! Yay!

Susie Farrell Mayowski (caregiver)…My daughter actually wanted a hug and had a smile on her face tonight. I was almost in tears with that.

Grant Mealey (survivor)…Hi, Donna. OK, so I learned this week that when my voice escalates, it causes heck to break loose. So, it’s apparently up to me to keep things calm by leaving for a while before a problem happens. I’m a little nervous, since I am neither quiet nor mellow. I have been working on this for a few days and seem to be doing well. I have learned I can voice concerns over things, as long as I remain calm. OK, it’s a big step forward, and I can do this. No one deserves to be yelled at.

Michael Montepara (survivor)…My Itty-Bitty Giant Step for today was actually waking up, getting dressed, and having at least one cup of coffee. For me, that small accomplishment is a lot harder than one would imagine.

Michael Montepara (survivor)…My Itty-Bitty Giant Step accomplishment is getting outdoors in bitter 16-degree cold, starting and de-thawing my poor truck, and taking my friend to his uncle’s house a few towns away. For me, movement in cold mornings is extremely difficult! Stay warm, be well, and smile a little smile today.

Shanna Wolf Heart Powell (survivor)…Last week I went Christmas shopping – first time since my TBI (approximately two and a half years ago)!!! I forgot what I was doing once, but I didn’t panic, and I didn’t stress!! I dominated the situation!!! But, I do have to do a return/exchange tomorrow!!! I got one item wrong!!! Not bad, considering, I guess!!

Scott Sheehan (survivor)…Eighty-four hours of world peace. No hate or anger, and I will play any song for anyone in the world during my record-breaker. Ambitious? Thanks to you, even more so now. As support grows, so does the ambition. Got my first sponsor. The focus it takes makes me a blithering idiot. My speech and vision are affected. Learned to play blindfolded. Been called a retard thousands of times. And I open up to you now because “it’s time” (the name I always wanted to call a band). But it’s time, to make Ma and Dad proud. And save the world. And no better time than my 50th birthday. Hahaha. An old guy. Doing the impossible. With a traumatic brain injury, no less. I know this is long. Understand this is huge. And now, you are a part of it. Hour 85, I will probably die. But not until then. For Ma, Dad, Milo, and you and to save the world! A lot of work to do in the next 13 months.

Laurie Whyte (survivor)…I realize what depersonalization means! I’ve been a chameleon since my injury – just doing what everyone else does or asking for advice all the time. Or over-sharing. Not really knowing my own mind. It’s been 9 years, and I’m starting to think for myself.

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

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

SPEAK OUT! Itty-Bitty GIANT Steps

Itty-Bitty GIant Steps for Blog

 

 

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

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

Bart Boughner (survivor)…For me, these past ten days were hard, but I held my head up and I did what is best for me and my kids. I allowed outside people to talk with my doctors. My kids are more than willing to help me with just my being honest. I showed them all my meds and explained every one of them. I stayed true to myself, and things turned out well! It’s never a good thing to hide things from people. I always stay an open book to anyone who wants or needs to know.

Bob Calvert (survivor)…I have had five surgeries since my last trip to Iraq and Afghanistan. I keep hoping that there won’t be any more surgeries. But, it looks like I have no choice for a hernia, and the first of two foot-surgeries did not go well. Next week, my doctor is asking Medicare to approve a wheelchair so I can get out of my apartment. Sometimes it gets to me, but what keeps me going is when I keep hearing story after story of what our military men and women and veterans have gone through as a result of their service to our country and what many of them go through every day. That keeps me sitting at this computer as long as I can every day and keeping our talk show (www.talkingwithheroes.com/about) and our mission going.

Michael Coss (survivor)…I am now starting to walk indoors without a cane – 9 years post injury. “Everything is possible when you believe.”

Penelope DeYoung (caregiver)…My husband had finished 13 days of HBOT (hyperbaric oxygen therapy), when, on Tuesday, October 28th, at 3:00 in the morning, I woke up to the bed’s shaking to find him having a grand mal seizure (the second one in five weeks and only the third in two and a half years). He was blessed in more ways than one. First, he had it in the night, so he was already lying down and on his side. I also kept my cool as I called 9-1-1. My husband has made a giant step forward because the doctor dropped a seizure medication that we now know was causing “brain fog.” He upped the dosage of another anti-seizure drug that was making my husband sick when it was started this past summer, but now his body has adjusted to it, and he is tolerating it very well. The higher dose of the “better” anti-seizure drug and the HBOT together have made Jim much more aware. He has shown initiation and motivation. We went to a spaghetti dinner in our hometown last night. People were awed by how much difference they noticed in his awareness. He knew many more people than I did. It was great to see so many people come up to him and say, “It is so good to see you.” Jim’s response to them was, “It is so good to be seen!” I love the progress he has made cognitively! Thanks for letting me share!

Jamie Fairies (survivor)…Hi, Donna. I saw your post on the wall of the group I created – Supporting ABI (Acquired Brain Injury). I thought that perhaps creating that group in 2007 to promote the awareness of brain injury and the Peer Mentor Support Program for those affected by brain injury would be considered an Itty-Bitty Giant Step. I am a survivor of multiple brain injuries.

Melanie Leatherman (survivor)…An Itty-Bitty Giant Step is something small that’s a big deal for us, right? I’m 4 years post. Every year, I’ve tried to go back to my old profession as a stylist, but it never worked out. Friday I tried again, and I could! Awesome feeling. I think it’s a big accomplishment for me. I can pretty much do everything now that I was told I couldn’t. I live alone with my 13-year-old and cook, wash her clothes, and make her lunches for school – things that most mothers don’t realize how big of a deal that is.

Barbara Zirilli-Lonergan (caregiver)…Today is day 40 for my dad. He’s still in the early stages of his recovery. He’s currently in a vegetative state, and he occasionally responds to commands. I am just thankful for today. Love to all of you.

John E. May (survivor)…I have an incredible giant step. I’m still breathing and unnaturally happy!

Grant Mealy (caregiver)…I’m reminded again not to be so hard on my partner, who has PML (progressive multifocal leukoencephalopathy). He is not what he used to be, and he never will be again. He did not go through a bad illness to irritate me. I will forgive myself for yelling and move foreword. We are lucky to have each other.

Melinda Murphy (survivor)…One of my secrets that very few people knew was that I lost the ability to tie my shoes after my accident because I was unable to tie a bow. Well today, for the first time in over three and a half years, I did it. I have been crying for an hour. It’s the little things as well as the big that are so very important in that whole “independence thing.” God is so good to me.

Marti Lynch Owens (caregiver)…Gene’s Itty-Bitty Giant Step was last night (November 8th). (His accident was September 25th.) His trach has been removed. He said, “Home, Marti,” and I replied, “Not yet.” He asked, “Why?” and I tried to explain. He was angry, but I didn’t care – I was so happy to hear him speak. He always has emotions. After I left, the hospital called. He got himself out of bed. He was sitting on floor and pulled out his feeding tube, but he is fine – Thank God!

Shana Storms (survivor)…My Itty-Bitty Giant Step is that I went back to school. I got my BS degree. Now on to my MS.

Sunshine Struble (caregiver)…GIANT! January 6th will mark two years for my beautiful boy. He has not slept in his room since the incident – at first because his body was incapable of doing stairs, then because he was so fearful of being away from Mom and Dad. Tonight he is sleeping in his newly designed (in his way) room. I am so proud. It brings tears to my eyes.

Sandra Williams (survivor)…I can exercise without shaking. My shaking wasn’t from fatigue. When I began any form of a stretch and held, my legs would shake, even at the beginning. It’s not the same as shaking when your muscles are tired.

Sandra Williams (caregiver)…My son asked for his own 504 meeting and accommodations at work. (Section 504 is a federal law that protects students with disabilities from being discriminated against.) He said, “I need you to fight for me, Mom. The school isn’t listening.” It’s the first time he has admitted he needs help!

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

 

 

On the Air – Brain Injury Radio Interview with Dr. David Figurski Prisoner without Bars: Conquering Traumatic Brain Injury

On the Air – Brain Injury Radio

Interview with Dr. David Figurski

Prisoner without Bars: Conquering Traumatic Brain Injury

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You’ve heard David’s story from my point of view. Yesterday David shared his perspective of living with traumatic brain injury. He spoke about how his life has greatly changed for better…and for worse.

david-running-in-hall-

David Figurski 3wks before Traumatic Brain Injury

We learned about David’s life as a child and his educational career, which he began as a Kindergarten dropout. He told of the years that led up to our marriage and also about his life as a Professor of Microbiology at Columbia University, both before and after his TBI. We found out how he is coping with this new life thrust upon him…and upon us. The show ends with me brushing tears from my cheeks as David talks about the heroic acts of caregivers and my role in his recovery.

12 D&D I Donna O'Donnell Figurski  & David Figurski Dancing 13 copy

David & Donna Figurski Starlight Dance Studio 8yrs after Traumatic Brain Injury

If you missed the show, don’t fret. You can always listen to the archived show. I’ve included the link below.

Please SHARE!

I hope you’ll tune in to my show, “Another Fork in the Road,” which airs the 1st and 3rd Sunday evenings of every month. The show starts at 5:00p Pacific Time and runs for 90 minutes. On the fifth Sunday in a month, Julie Kintz, Host of “Quantum Leap,” and I team up to cohost a show called “Another Quantum Leap in the Road.”

 

See you “On the Air!”

Caregivers SPEAK OUT! . . . . . Gill Evans

SPEAK OUT! – Gill Evans

by

Donna O’Donnell Figurski

 

Evans, Gill Caregiver with Flamingoes

Gill Evans – Caregiver for her Husband

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

Gill Evans

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

Birmingham, England     gce46@hotmail.co.uk

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 is my husband. He had his TBI in 1984 at age 23. The TBI was originally due to a motorcycle accident, but he has been reinjured three times since then, the last being 11 years ago. He has had one work-related injury and two motorcycle-related head injuries.

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 22 and in full-time work. He was living with his mom. We decided to split up due to his being violent, but we continued seeing each other as friends. We got back together when I was 40 and he was 41. We married 2 years later. I have looked after him since because the last injury left him unable to work.

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

When we got back together, I had two teenage boys.

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

I work full-time, but I have 13-hour shifts, so I’m home 4 days each week. I no longer work night shifts, as he struggles with the change that causes.

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.)?

My husband finally accepted help three weeks ago. When he had his TBI 30 years ago, there was nothing in place for him. He got speech therapy, and that was it.

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

No

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?

He got speech therapy at home.

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

He required constant prompting of his memory and calming down due to temper. He had a broken leg, so he was wheelchair-bound for a couple of weeks until he was able to have crutches.

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

I’m not really sure that I can answer this. My response probably wouldn’t make sense, as it would be “better than what, and worse than what?”

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

I miss my independence – not having to worry about my husband when I’m out or not having to walk on eggshells because he’s in a bad mood. But, as much as I miss my independence, I regret that over the last couple of years he has stopped going out unless he has to. So, I go everywhere on my own. Sometimes I wish I didn’t have to.

Evans, Gill Caregiver IMG_1130

Gill Evans

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

On reflection, not a lot

15. What do you like least about TBI?

I dislike that my husband’s last injury took him away from me and that he is like a stranger sometimes. He can forget who I am, and he will talk to me like I’m his ex-wife.

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

I’m helped by the fact that I have loved my husband since I was 17 years old. (So, I have known him with the TBI most of my life.)

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

When we married, I had two teenage sons living at home, and this became really difficult. There were lots of arguments. After two years of our fighting, my sons decided it was better if they moved out. I have spent the last eight years trying to rebuild my relationship with them, and thankfully we are much closer. Also they, to an extent, get on with my husband.

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

Not really. My husband doesn’t go out much, and I go out with my sons or with colleagues from work. The one rule I have when I am out is that, unless it’s an emergency, he is only allowed to phone me once and the rest has to be text messages. Also he is not to bombard me with texts if I don’t reply.

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

I’m hoping to be retired (or at least to be coming up to retirement) and spending some quality time with my family.

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

Evans, Gill Caregiver IMG_1129

Gill Evans – Caregiver for her Husband

Have boundaries, boundaries, and boundaries – to protect your own sanity. Remember to keep time for yourself. Don’t tolerate violence. It’s okay for you to get mad occasionally, but walk away. You won’t win a fight (verbal) with him or her. Grow a thick skin – he or she doesn’t always mean what is said. If you take everything personally, you won’t survive. Remember most of all, regardless of the effects of the TBI, your partner is still in there, so don’t give up hope of ever seeing him or her again – even if it’s only for a fraction of a second that he or she shines through. That’s why at the end of the day you are still there.

 

Thank you, Gill, 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 Gill.)

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.

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