TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘caregiver’

Caregivers SPEAK OUT! Harriet Hodgson – Caregiver and Author

Caregivers SPEAK OUT! Harriet Hodgson (caregiver for husband)

presented by

Donna O’Donnell Figurski

(Author of Prisoners without Bars: A Caregiver’s Tale)

 

Harriet Hodgson – Caregiver for her husband, John – Author of many books.

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

Harriet Hodgson

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

Rochester, Minnesota, USA      harriethodgson@charter.net

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?

I cared for my mother, who had been a brilliant woman before her Vascular Dementia. At the time, nobody knew mini-strokes continued to spread.

4. When 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 started caring for my mother after she was found wandering in a department store. Interestingly, my mother called from Florida to tell me this story. “The clerk told me cars are parked outside the store.” In my fifties, I moved my mother from Melbourne, Florida, to Rochester, Minnesota, to care for her.

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

I wasn’t caring for anyone else 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 was a freelance writer. Continuing to write was difficult. My mother lived with us for a month, while her apartment in an assisted living community was being readied for her. If I sat down at the computer, she stood behind me and literally breathed down my neck.

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

I moved my mother into an assisted living community. Also developed a weekly schedule of care: shopping day, medical/dental day, errand day, out to lunch day, etc.

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

On a frigid night, when the temperature was 35-below and the wind chill was 50-below, my mother called and said she was going back to Long Island to be with friends. All of the people she mentioned were deceased. I called her physician, and he wrote orders sending her to nursing care, a locked ward.

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

No coma. Profound confusion.

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?

No rehab. There was no way to fix my mother’s mind.

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

Complained to management. Social services came and evaluated her. Mom couldn’t answer any of the questions on the Mini Mental Status Exam. Worse, she said, “My daughter put me in here.”

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

Years later (maybe ten), caregiving took over my life. I’ve cared for three generations of family members: my mother, my orphaned twin grandchildren, and now my husband, who has a spinal cord injury. This prompted me to write a series of books for family caregivers.

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

I miss the freedom of my old life and being able to do what I want. Am also physically and emotionally tired.

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

Being even closer to my husband. We are devoted to each other.

15. What do you like least about brain injury?

I hate the unpredictability of brain injury. For example, my mother would call my phone number repeatedly and hang up repeatedly because she didn’t recognize my voice.

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

Learning about Vascular Dementia and writing have helped.

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

Eventually my mother’s brain shut down. She couldn’t read, couldn’t speak (grunts), didn’t recognize me, and thought I had come to harm her. This was heartbreaking.

Harriet Hodgson – Caregiver and Author; Dr. John Hodgson

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

I don’t really have a social life.

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

My plans are to care for my husband until one of us dies. Both of us are 84 years old.

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

Be kind to yourself, and be on the lookout for Compassion Fatigue.

 

If you would like to learn more about Harriet, please visit her website;

Harriet Hodgson

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Survivors SPEAK OUT! . . . Thomas Hopkins, Jr (Tommy)

Survivors SPEAK OUT! . . . Thomas Hopkins, Jr (Tommy)

presented

by Donna O’Donnell Figurski

Tommy Hopkins, Jr Survivor of Brain Injury

 

 

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

Thomas Hopkins, Jr.

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

Mountain Home, Idaho, USA (originally from Wisconsin)

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

I was 19 years old.

4. How did your brain injury occur?

I have had several head traumas that led to my brain injuries. I’ll discuss the main ones. I have two injuries from February 2003. The first was due to a JDAM bomb (Joint Direct Attack Munition – a guidance kit that converts unguided bombs into all-weather precision-guided munitions). The second was from an explosion in a unit I was working with. In 2006, on my 4th tour, I had gotten a hammer to the head. I do not recall this incident at all. My fourth injury was in May 2007. I was still on my 4th tour. Our camp got morning RPG/mortar hits. The shop I was working in had one hit close by that shook the shop. The 40-lb. equipment I was working on fell over and hit me in the back of the head.

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

I started noticing issues after my first injury back in 2003 – daily headaches, ringing in my ears, light sensitivity, plus I would invert numbers.

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

Due to the units I was in, I did not get treatment. I’ll rephrase that – due to the units I was part of, unless you lost a limb, your sight, etc. or your life was in danger, you were not allowed to seek medical treatment.

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

No coma

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

I started seeking help once I got out of the army. I started at the VA (medical care at hospitals of the Veterans Administration). It was not the best outcome.

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

I have convergence insufficiency (a condition in which your eyes are unable to work together when looking at nearby objects, creating double or blurred vision),

photophobia, daily headaches that turn into migraines, and constant tinnitus. One doctor said I have damage to the autonomic and limbic systems in my brain. Other doctors have said that I don’t even have a brain injury! (LOL) I have no concept of time; I experience jerks (involuntary muscle movements); I search for words; my speech is slurred; my brain often won’t let me get my words out; and I have a poor memory. I do not feel 60+% of my body, and my lower limbs do not work a lot of the time. “Partial Para” is what they call it. At times, I need to be in a wheelchair.

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

Worse

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

I miss my memory. It used to be photographic.

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

Retirement (LOL) … Driving my wife nuts (LOL) … Um, working my brain in different ways to work on problems and situations that come up in my hobbies

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

I’m not Johnny-on-the-spot anymore. I miss my memory. My body is going to shit.

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

MY WIFE. Even though most of my injury is “invisible,” she showed me that I also have physical scars that I and others can see.

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

Yup. That’s a very long answer.

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

Yup. We lost a lot of friends and family because I was not the same Tommy I was before I was brain-injured in the war.

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

Tommy Hopkins, Jr. Brain Injury Survivor
Caregiver – Kristina Hopkins

MY WIFE! I have a rough idea of some of what she does for me, but I have no clue of what all she does.

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

My “plan” is to maintain what I have and live each day as if it is my last.

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.

Yes. You have to adapt to your new self. That old person is gone. I had to realize I will never be as I once was, BUT I am still able to do most things with adaptation.

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

My advice: Good days come and go. Work with the day you have because you don’t know what tomorrow will bring.

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(Photos compliments of contributor.)

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New NEWS: . . . . . . . 2019 Caregiving Visionary Award Finalist

New News:    2019 Caregiving Visionary Award Finalist

presented by

Donna O’Donnell Figurski

th-1YAY! I am one of ten finalists for the 2019 Caregiving Visionary caregiver-word-clipart-1Award, so I’m still in the running. A great big THANK YOU to all who voted for me. Your votes helped immensely. YOU made this happen and I am so honored to be a finalist. Winners will be announced March 1st.

Thank you! Thank you! Thank you! THANK YOU!

 

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SPEAK OUT! NewsBit . . . . . . VOTE for Me! – Caregiver Visionary Award

VOTE for Me! – Caregiver Visionary Award

presented by

Donna O’Donnell Figurski

This is just an itty-bitty, tiny-teeny, itsy-bitsy newsletter because I want to share some exciting news with you.

I have been nominated for the “Caregiver Visionary Award,” which will honor five th-1caregivers who stand out in their caregiver world. Now frankly, I think all caregivers deserve this award, but, alas, only five will be chosen, and I hope I am one of them. David thinks I should be too. He nominated me.

I need your help. Only you can make this happen. Here’s how it works. In order to be chosen as one of the top ten finalists, I need votes. Internet votes! That’s it. Pretty easy. All you have to do is click on the link I posted below.

https://www.caregiving.com/ncc19/cva-donna-odonnell-figurski/

Voting ends at Midnight ET on February 25, 2019. So please HURRY!

Scroll to the end of my nomination.
Click on “Cast your vote.”
Takes you to a new page
Lists all nomineesplease-vote
Mark my name, Donna O’Donnell Figurski.
Click “VOTE!

See, that wasn’t so hard, was it?

On March 1, 2019, the winners will be announced. You’ll probably know right away because you will hear me squealing and jumping for joy. And now, I am going to cross my fingers until March 1st. pco5aerzi

ashdis kjdihio jsh pogwkp d wyqye. Oops! It’s really hard to type with crossed fingers.

Translation : Thank you so much from the bottom of my heart!

P.S. Phew! Thank goodness that’s done. I hate to ask for things!

 

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Caregivers SPEAK OUT! . . . . Malissa Mallett (caregiver for her son)

Caregivers SPEAK OUT!

Malissa Mallett (caregiver for her son)

presented by

Donna O’Donnell Figurski

“Malissa Mallett will be my guest tomorrow (Sunday, February 17) on my radio show (Another Fork in the Road) on the Brain Injury Radio Network. She has been caregiver for her son, who had an anoxic brain injury, since 1997, when he was an infant. Malissa is Program Director for the Brain Injury Alliance of Arizona (BIAAZ). We will discuss caring for her son and the effect of her expertise (opioid use on the brain.) My show broadcasts live at 5:30 PT (blogtalkradio.com/braininjuryradio), or it can be heard as a podcast anytime (https://survivingtraumaticbraininjury.com/category/on-the-air-show-menu/).”

Malissa Mallett

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

Malissa Mallett

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

Laveen, Arizona, USA     Program@biaaz.org

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 survivor is my son. He was 2 months old. His brain injury was caused by aspiration, causing him to stop breathing (anoxic brain injury).

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?

My care began in April 1997. I was 22 years old. I was my son’s main caregiver then, but I’m not now.

th

Babies get brain injury too

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 had just returned to work after giving birth. I was not able to continue working, since my son required 24-hour supervision for his heart and lung monitor.

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

Occasionally. My family, who were trained in CPR, would care for my son to give me a break or a night out.

cartoon-hospital8. 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?

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 your survivor was getting therapy?

No

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

This is difficult to answer given my son’s age at the time of his brain injury.

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

My life was challenging all throughout my son’s life.

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

I will never know what could have been.

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

Does not apply

15. What do you like least about brain injury?

shakilaramanwordpresscom

Learn about brain injury

The lack of understanding in the community

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

Yes. Education.

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

Yes, it has. We can discuss this on your radio show. It’s too much to explain here.

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

Not anymore

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

I would love for my son to be successful and independent.

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

supportTake care of yourself.

Be surrounded by supportive people.

Educate yourself.

 

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

This Song Could Be a Caregiver’s Anthem

by

Donna O’Donnell Figurski

David & Donna Aunt Irene's Funeral 060718

 

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

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We don’t look this bad.

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

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

 

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

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

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Caregivers SPEAK OUT! . . . . . Charity Hamilton (caregiver for momma)

Caregivers  SPEAK OUT!  Charity Hamilton

(caregiver for her momma)

presented by

Donna O’Donnell Figurski

 

Charity Hamilton – Caregiver for her Momma

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

Charity Hamilton

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

Shippensburg, Pennsylvania, USA

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

The survivor is my momma. 🙂

How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

My mother’s affliction is brain cancer and seizures. It was diagnosed in 2012 when she was seen after a car accident. (She didn’t remember what happened.) The hospital was going to let her leave, but we demanded a CT (computerized tomography) scan and an MRI (magnetic resonance imaging), as her husband (now deceased) knew something was wrong. That’s when the cancer was found. It had apparently started as a child!

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 became my mother’s only caregiver in 2016, as her husband helped care for her, but he recently passed due to bad health. I am now her full-time caregiver. I am 24.

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

I have three beautiful children of my own, whom I care for.

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

I was then and am now a full-time employee.

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

I had no help after my mother’s husband passed.

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

I began care immediately after my mother was diagnosed.

9. Was your survivor in a coma? If so, what did you do during 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 your survivor was getting therapy?

My mother had no rehab.

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

My care was needed whenever my mother had seizures. I also helped her deal with memory loss. I assisted her with medications, and I helped her with showers.

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

With everything I have on my plate, my life is complicated and very busy. Only brain-injury-caregivers truly understand.

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

I miss not being so busy!

14. What do you enjoy most in p

Charity Hamilton – Caregiver for Mom, Jean Jones

ost-brain-injury life?

I enjoy talking to mom and going out and about with her.

15. What do you like least about brain injury?

I don’t like the tons of errands and feeling like the parent.

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

Caregiving came naturally because she’s my mother and I would never let her be alone.

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

Yes. My mother’s brain injury has made home-life and relationships tough and stressful sometimes, as they don’t understand I HAVE to care for my mother – no one else will.

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

Not really. I didn’t have a social life before my mother’s diagnosis.

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

My future is nursing.

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

Have patience!!

 

(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.

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Brain Injury Resources . . . . . Brain Injury Journey Bulletin by Lash & Associates Publishing

Brain Injury Journey Bulletin by Lash & Associates Publishing

presented by

Donna O’Donnell Figurski

 

Lash & Associates

Lash and Associates Publishing/Training, Inc. introduces its newest brainchild. The Brain Injury Journey BULLETIN is a compilation of brain-injury resources on a variety of topics of interest to those who live in the world of brain injury. Caregiving, memory issues, and grief and loss are some of the interest areas presented in the bulletin.

Lash and Associates Publishing/Training, Inc. is the leading publisher of brain-injury-related books and resources. They are in the know!

The bulletin is published free of charge each month. You only need to sign up for your subscription. Follow this link to get your free subscription, and YOU can be in the know too. Brain Injury Journey BULLETIN

 

 

July 2017
Brain Injury Journey BULLETIN: GRIEF and LOSS

June 2017
Brain Injury Journey BULLETIN: Executive Functions Critical and Vital to Organization, Prioritizing, and Behaviors

May 2017
Brain Injury Journey BULLETIN: “Caregivers – The Visible/Invisible TBI Support Network”

April 2017
Brain Injury Journey BULLETIN: Memory

 

To locate additional books pertaining to brain injury, please check out Lash & Associates Publishing/Training Inc.

 

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TBI Tales: . . . . . . . . . . . . . . . . . . . . I Tripped & Stumbled, but Did Not Fall by Donna O’Donnell Figurski

I Tripped & Stumbled, but Did Not Fall

by

Donna O’Donnell Figurski

Donna O’Donnell Figurski

Recently, as I got out of my car, I stumbled on the curb. Somehow in the darkness, I did not see it. Though the event took less than a second, one thought ran through my head. It was not, “Oh, no! I am going to break a bone or scrape my knee.” It was not, “What a klutz! I’ll ruin my clothes.” And it was not about how embarrassed I would be. All of those possibilities probably would have been my first thoughts – before brain injury entered my life when my husband had a traumatic brain injury in 2005.

Now my mind is only a thought away from brain injury. So, as I tripped and stumbled, but did not fall, my mind raced to, “Please don’t let me hit my head.” I didn’t care how silly I looked or about my clothes being ripped or about getting any broken bones (they would heal). I worried about getting a brain injury. I worried about how a brain injury could change my life forever. I worried that if I were hurt, I could not sufficiently care for my husband, who needs my daily attention. Yes, those thoughts did race through my head in that fleeting second.

It only takes a second for a brain injury to occur. Most brain injuries occur because of an accident. Though we may be aware of the possibility of accidents, they cannot all be avoided. Fortunately, my accident was avoided – just barely. I can only hope that my potential accidents will be few and far apart in the future. I hope yours will be too.

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TBI Tales: Inspiration . . . . . . . . by Bonni Villarreal (caregiver)

Inspiration

by

Bonni Villarreal (caregiver)

presented by

Donna O’Donnell Figurski

Bonni Villarreal – Caregiver

March 21, 2012, is a day that changed my life forever. It started off like any average day. I got up and went to work. Mike was asleep when I left. I called him around 8:30 that morning to let him know I wouldn’t be at my desk, in case he tried to call me. He sounded fine. Then, just by chance, I happened to be at my desk at 10 am when my phone rang. It was Mike … telling me he was having a stroke.

By the time I got to the house, the ambulance was there. Mike was awake and reaching for me. I didn’t think it was too serious because Mike was alert and talking. But, by the time we got to the hospital, that had changed. The doctor informed me that Mike had a huge blood clot near his cerebellum, and he had to be life-flighted to another hospital because he was too critical to stay at the one he was at.


I had to sign papers for life-saving brain surgery. Mike was in a coma for ten days. We didn’t know if he would wake up, and, if he did, what condition he would be in. When he “woke up,” Mike wasn’t anything like the man I married. He stayed in the hospital for another month, and then he was transferred to a nursing home.

Those days were some of the darkest in my life. They treated Mike as if he were a hopeless case. I wonder what would’ve happened to him if I hadn’t been around.

Mike Villarreal – TBI Survivor

He was tube-fed, couldn’t speak (he wrote instead), and couldn’t walk. He was totally helpless. Plus, he was battling infection after infection. I didn’t think things would ever return to normal.

Fast forward to January 2017 – almost five years post stroke. Mike passed his barium swallow test, and he is having his G-tube removed! He is walking almost unassisted! He is talking! I told Mike, “You are an inspiration. You give hope to people who have lost it, you have renewed hope for people who are about to give up, and you keep hope alive for people who are just starting this long journey.”

Mike wants everyone to know – DON’T EVER, EVER, EVER GIVE UP. No matter if it’s been five, ten, or fifteen years. Keep hope alive! Mike did, and look how far he has come!

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