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Caregivers SPEAK OUT! . . . Norma Myers ~ Author, Advocate, & Mom

Caregivers SPEAK OUT! Norma Myers ~ Author, Advocate, & Mom

presented by

Donna O’Donnell Figurski

Norma Myers Caregiver

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

Norma Myers

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

Salem, Virginia, USA

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

Steven was 22 years old. He was involved in a car crash with his brother Aaron. Aaron didn’t survive the accident. Aaron was 26 years old

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

August 13, 2012

Were you the main caregiver?

I resigned from my career with Advance Auto and went to Shepherd Center in Atlanta, Georgia, with Steven, but I had complete support from my husband, Carlan. He drove back and forth from Salem to Atlanta to provide support.

Are you now?

Steven lives independently.

How old were you when you began care?

47 years old

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

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

I was employed, but we choose for me to resign so that I could be Steven’s primary caregiver. I returned to the workforce 2.5 years ago – big accomplishment!

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

I had my husband’s support. We also had offers of help from family and friends. We also received financial support from family and friends through fundraisers.

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

Steven was at Carilion Roanoke Memorial Hospital for a month before being transported to Shepherd Center in Atlanta, Georgia.

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

Steven was in a medically induced coma. He had a craniectomy (actually, the first of two). (A craniectomy is the surgical removal of a portion of the skull.) We sat by his bedside, and we also planned a life-celebration for his brother Aaron.

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?

Steven received every discipline of therapy available at the Shepherd Center and when he returned home to Virginia. We spent two months at the Shepherd Center for Rehab –

one month, inpatient; second month, outpatient. I spent time learning everything possible about Steven’s rehab needs for when we returned home.

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

Getting Steven to his appointments. Making sure we stayed on top of every available resource, including grants, gifts, and programs that would help Steven with his recovery.

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

That is a loaded question. It has changed in many ways, such as I feel like I was there for Steven when he needed me, which I am thankful I was able to do so. We have experienced “firsts” all over again, such as waiting for Steven to speak his first word, to take his first step, and to become independent all over again. It has made me a stronger person because not only have I experienced the death of my first-born son, but I have also experienced what it’s like to watch my other son learn how to do life all over again.

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

Witnessing my sons’ enjoying being brothers. I miss being a mother to both of my sons. I also think about what Aaron’s life would look like at every stage of his life if he had survived and what Steven’s life would look like without a traumatic brain injury (Ambiguous Loss).

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

Celebrating Steven’s victories in life. Helping other families navigate through their journey of TBI (traumatic brain injury).

15. What do you like least about brain injury?

There is no cure, and it’s an invisible disease. I also wish that when people are curious about what happened to Steven, they would ask instead of stare … Steven is fully comfortable in discussing his accident.

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

Steven’s motto helps me put things into perspective … ”Deficits do not define him.” He is an overcomer.

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

We rearrange life to be available to Steven should he need us if he has a seizure. Currently, with no license due to seizures, we make sure he is where he needs to be all while balancing our careers. We make it work as a family!

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

Of course! As parents, we will always put our son’s needs first.

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

I have no idea! We can only take one day – actually one minute – at a time, always trying to better ourselves and be thankful that, while this journey isn’t what we planned for our lives, it’s what God gave us. And we will do the very best we can day by day to honor Him.

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

Every brain injury is different, so please don’t do the comparison game. Take one day at a time. Tap into every resource available to you, and, trust me, there are so many out there. You are not alone – there is no shame in asking for help! I will do anything for my fellow brain injury survivors and their families. I am here to offer a word of encouragement through my blogs and volunteer work. Don’t give up!

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Caregivers SPEAK OUT!

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Caregivers SPEAK OUT! . . . . Jenifer Fallert

Caregivers SPEAK OUT! Jenifer Fallert

presented by

Donna O’Donnell Figurski

What is your name? (last name optional)

Jenifer Fallert

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

Lake Saint Louis, Missouri, USA

What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

My brain injury survivor is my daughter, Jordan. She was one month away from her 24^th birthday when she was struck by another car as she drove home from work.

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?

Jordan was in the ICU (intensive care unit) for about 25 days before she was transferred to a regular floor. Thirty days after her accident, she was transferred by ambulance to another hospital (Madonna Rehabilitation Hospital) in Lincoln, Nebraska. Jordan was at Madonna until June 25. She was then discharged to home care. I was Jordan’s only visitor, along with her nurses who cared for her from the time of her admission. Even in the ICU, nurses aren’t able to attend to every need, so I did as much for Jordan as I could. I am Jordan’s primary caregiver, but my role has changed to more of an advisor. I was 47 at the time of Jordan’s accident.

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

I had two other teenage children whom I was caring for at the time of Jordan’s accident.

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

I was employed as the Director of Operations for a preschool at the time of Jordan’s accident. I took a six-month leave and worked part-time before deciding to stay home with Jordan full-time.

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

Jordan was injured during COVID, so most of the time that she was in the hospital or rehab, I was the only one helping her.

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

I provided as much care for Jordan as I possibly could. I started immediately after the accident.

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

Jordan was in a coma for about 14 days and minimally conscious for about another month. While Jordan was in a coma or in her minimally conscious state, I did as much as I could to care for her. I read or crocheted a little to pass the time in the hospital and rehab. I was also dealing with insurance companies and the legal entities involved.

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?

Jordan received inpatient rehab at Madonna Rehabilitation Hospital in Lincoln, Nebraska. She received physical, occupational, speech, and recreational therapies. She also did intensive outpatient therapy at Madonna for another six weeks before coming back home and doing outpatient therapy at SSM Rehab in Lake Saint Louis, Missouri. I moved to Nebraska and lived in a home for caregivers on the grounds of the rehab facility. Once Jordan was released to outpatient therapy, she lived with me in Nebraska until we came home.

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

R-4 When Jordan first came home from rehab, she required help with most of her ADLs (Activities of Daily Living). As time has gone on, she has been able to perform most of her ADLs on her own. She has short-term memory loss, so my role is helping to make sure that she remembers things and stays safe.

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

My life has changed a lot since I have become Jordan’s caregiver. I no longer work, and I spend most of my time with her at home. The thing is that I wouldn’t have it any other way. I have always loved being with Jordan and spending time with her. My greatest joy is being a mother to all my daughters. I’ve gotten to help raise Jordan twice, and that is quite the gift!

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

I miss the daughter whom I knew for 23 years, the relationship Jordan had with her sisters, and the innocence that we all had – the blissful unawareness that most people have that tragedy can strike at a moment’s notice.

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

I enjoy getting to spend so much time with Jordan and helping her grow into the wonderful person that she is.

What do you like least about brain injury?

The emotional and cognitive side of brain injury can be very draining and hard on family relationships.

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

No answer

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

Jordan’s accident, the legal trial, and COVID have had profound impacts on our family. (The other driver in Jordan’s accident was charged with second degree assault. He was driving 79 mph in a 45-mph zone and had a history of aggressive driving. I can’t describe how that feels. His act of violence on an innocent human will reverberate through our lives forever.) Jordan Fallert Survivor

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

We spend more time at home now. Social settings are hard on Jordan’s ability to communicate effectively, which makes her feel very frustrated.

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

I don’t know what I hope to be doing in ten years. Even though it’s been over a year since Jordan’s brain injury, we are still in the early stages. I hope she is more healed.

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

When Jordan was in the hospital, the doctors and nurses would tell me that this is not a sprint; it’s a marathon. That is the truest statement. It takes years and years to heal from a brain injury. Time and patience are key.

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Caregivers SPEAK OUT! . . . . Greg Payan – Author

Caregivers SPEAK OUT! Greg Payan

Caregiver & Author

Donna O’Donnell Figurski

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1. What is your name? (last name optional

Greg Payan

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

As I write this, I’m currently in Bethany, West Virginia. Since the pandemic started, I’ve been dividing my time between here and Forest Hills, New York.

Email? (optional)

Gscp54@yahoo.com

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

My care-recipient was my long-time girlfriend, now my wife.

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

My wife, Holly, was 39 when her aneurysm ruptured.

What caused your survivor’s brain injury?

We had no forewarning. Holly went to bed the night before, maybe with a dull headache. She woke up in the early morning hours in tears and unable to move. She had a seizure before being loaded into the ambulance and brought to the hospital.

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 Holly’s caregiver once she left the ICU (intensive care unit) and was transferred to rehab. As her rehab center was concerned about liability for her wearing a portable defibrillator due to her heart failure during her rupture, I was at her rehab many hours a day. I was responsible for many things they did not do due to liability concerns. After Holly had been in rehab for two weeks, I largely took over her care. I had some help from my parents as I slowly transitioned back to my job.

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

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

I was employed at the time, and my employer was extremely flexible and understanding of the situation. I was given as much flexibility as I needed until my wife had fully recovered.

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

My parents were critical in helping, particularly as Holly had complications with hydrocephalus (swelling on the brain) resulting in multiple shunt surgeries. Also, her friends helped when they could. I’d give medication schedules and instructions, and they would spend the day with her when I had to work. We dubbed them “brain-sitters.”

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

Immediately. Holly was unconscious for the first 24 hours but woke up in a panic with a tube down her throat the following day, so you could imagine her state. I had to calm her down as best I could. The essential thing was that, when she woke up, she recognized me. I gave her a pen and paper, and she was able to write things down. I saved those notes, and they appear in a book I later wrote.

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

Just for a day. I have a difficult time remembering what I did. I was pretty much in shock. I did leave the hospital that night and tried to get some sleep, but I think I was just numb from trying to imagine if life would ever be the same.

Holly did two weeks of inpatient rehab. I went there daily while trying to work as well. My job was about 40 miles away, and I had to deal with New York City traffic, so those days were long. They were good and kind to Holly in rehab, but, as mentioned earlier, Holly had to wear a portable defibrillator after having heart failure in her initial bleed. Rehab would not touch the defibrillator to charge the batteries or clean it for liability fears. Additionally, the biggest problem was that the sensors on it would often shift. If they shifted, there would be a warning signal because the defibrillator was detecting what appeared to be an irregularity. If you did not reset it within 30 seconds, it would give Holly a shock large enough to restart her heart, even if she was just sleeping and doing fine. That was, by far, the most unsettling thing during rehab.

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

Aside from helping her out after numerous surgeries from her shunts and just general help during those times, she has made a miraculous recovery.

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

I believe life is better. I think my wife and I connect better. She sees me differently. We dated for 11 years prior to her bleed, but we got married soon after her recovery. I cherish calling her my wife.

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

Peace of mind. I thought tragedies and horrible life-events happened to others – that I’d have a pretty good life, live to old age, and die of natural causes. My life and the lives of my family members have been blessedly free from tragedy or heartache until my wife’s brain-bleed.

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

Not taking things for granted any more.

15. What do you like least about brain injury?

I worry a lot. Less so, in recent years. I think some of my worrying has to do with the hypertension I’ve been diagnosed with in recent years. In the first three or four years, I was a mess any time Holly had a headache or felt the slightest bit off.

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

Not really

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

Thankfully, it has not. I truly believe we made it out the other side stronger – with a better understanding of what we meant to each other.

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

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

I think at some point, we should go back for a scan to see if any other aneurysms are developing and just to see how Holly’s doing. She had multiple shunt revisions over a period of 18 months. They were basically annual follow-ups during which we hugged our neurosurgeon and his assistant and said we’re fine. Since then, we’ve just been living life. I fear at some point Holly’s shunt will eventually fail again. They are notorious for doing such. I imagine Holly will start to develop some headaches and we’ll have another surgery down the road. I’m dreading that, but I guess it’s minor in the scheme of things.

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

I almost feel a bit of “survivor’s guilt,” even though that’s not exactly the right term. My wife has made a full recovery that she had no right to make after a grade-4 bleed. Holly was a teacher at a college, and nobody would have thought she could return to it – but she did. Her good outcome is a combination of luck and the skill of her neurosurgical team. I see so many survivors of brain injury who suffer post-TBI (traumatic brain injury) through life and relationships, and I can do nothing but wish them peace in everything. I am truly awed by how strong they are to face the world each day with the myriad of problems that I see them going through in the various online support groups that I am a part of. I can’t offer advice. I can only say their strength inspires me.

Find Greg Payan’s book, PLEASE STAY wherever books are sold.

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(Photos compliments of contributor.)

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Caregivers SPEAK OUT!

Tagged with:

Greg Payan

Caregivers SPEAK OUT! . . . Drew Niemann

Caregivers SPEAK OUT! Drew Niemann

presented by

Donna O’Donnell Figurski

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

Drew Niemann

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

Lancaster, Pennsylvania, USA

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

My wife, Terry

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

(No answer)

-What caused your survivor’s brain injury?

Terry had a bicycle accident and two falls, which resulted in three concussions within three years. The second impact syndrome certainly played a role. (Second impact syndrome happens when the brain swells rapidly shortly after a person suffers a second concussion before symptoms from an earlier concussion have subsided.)

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

On and off – beginning in September 2014

-Were you the main caregiver?

Terry Niemann – Survivor of Brain Injury & Drew Niemann – Hosts of A Battle Within

Yes

-Are you now?

I’m more of a “support” person now.

-How old were you when you began care?

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

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

Yes

-If so, were you able to continue working?

Yes

7. Did you have any help?

Yes

–If so, what kind and for how long?

On and off for days and weeks

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

Immediately

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

A Battle Within – Podcast

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)?

Terry had physical, occupational, speech, vestibular, and vision therapies – all as an outpatient.

-How long was the rehab?

The duration of therapy depended on the particular injury being treated.

-Where were you when your survivor was getting therapy?

(No answer)

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

Day to day living; assistance in accommodating and with medical appointments

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

Some days are better; some days, worse.

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

I miss outdoor and physical activities.

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

I have a clearer understanding of what is important in life.

15. What do you like least about brain injury?

I dislike what the brain injury has taken from Terry and the pain it has caused her and continues to cause her.

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

Time

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

Yes. Roles changed in the household. Terry’s no longer able to work as a teacher, so it has affected us financially as well.

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

Yes. We cannot do the things we once did or do them to same level. We need to choose differently now.

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

(No answer)

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 patient. Learn as much as you can. Take time for yourself. Be sure to allow your loved one to do what he or she capable of. If you can and if it is possible, allow for his or her independence.

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Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post:

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

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

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Caregivers SPEAK OUT!

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Caregivers SPEAK OUT! . . . . Roxanne Greene

Caregivers SPEAK OUT! Roxanne Greene

presented by

Donna O’Donnell Figurski

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

Roxanne Greene

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

Wichita, Kansas, USA

What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

My husband was 35 years old when he developed sepsis due to an unknown infection. While he was at the hospital for that, the doctors discovered the presence of three frontal lobe brain tumors. My husband’s brain lost oxygen as they were trying to save my husband’s life. He also had a secondary brain injury – brain swelling – after brain surgery.

On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?

I began as my husband’s caregiver on February 13 2007 – the day I took him to the Emergency Room. I was his main caregiver then, and I still am now. I was 38 years old at the beginning of this journey – 12 years ago.

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

My husband and I had four young children – ages 3-12 at the time.

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

I was not employed at the time. I was a stay-at-home mom.

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

I was very blessed to have a lot of support. My husband’s parents were able to help, and I had other friends and family that came alongside me – helping with the children, meals, or house, etc.

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

The support began the minute we arrived at the hospital. Our pastors met us there shortly after we arrived. During my husband’s entire hospital stay and even through rehab, I always had someone with me.

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

Yes. My husband was in a coma about 5-6 weeks. He woke up very slowly and had to learn everything all over again. It was a very challenging time for the both of us. I was there as his cheerleader – cheering him on. It was hard to have a balance between caring for my husband and taking care of the children. I was very overwhelmed at times, but again, family support was crucial to my husband’s success.

Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

Yes. My husband had inpatient rehab for about a month, and then he transitioned to in-home rehabilitation, where the therapist would come into the home to do therapy. My husband had physical, occupational, and speech therapies and even counseling. He was in intensive therapy for about a year, and he had outpatient cognitive therapy off and on for another year?

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

My husband’s brain injury caused him to become aggravated easily. He has had memory problems and also issues with communication. I had to watch him when he was around the children in the beginning. He was totally dependent on me for everything. I was like a single mother – I paid the bills, and I took care of the house, cars, etc.

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

My life has changed drastically. My husband and I both say our new marriage started February 13th, 2007. He was then, and is now, a different person. We had to figure out how to be married again to each other as new people. It has been good because our love is stronger than before. It has also been very difficult because this is not what I pictured for my future. I have moments of self-pity and sometimes wish it could be the way it was. Those moments are fleeting, and I know I have so much to look forward to.

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

I miss my husband’s going to work every day. I miss his doing projects around the house. I miss his being able to be the protector and the provider that he once was. I miss being a stay-at-home mom and spending one-on-one time with the children (even though most are grown now).

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

My husband and I get to spend more time together. My husband is more loving than before. Before injury, he worked a lot and was not home as often.

What do you like least about brain injury?

I miss having more financial freedom. I sometimes don’t like having to do everything, including all the paperwork that goes into maintaining a home. I have to organize all of my husband’s doctor appointments, medications, and dealings with SSDI (Social Security disability insurance). It can get so overwhelming sometimes that I just want to cry.

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

Accepting the reality of my husband’s condition has helped. It is what it is. There is nothing I can do to change what happened to my husband. I decided I can either wallow in self-pity or pick up my feet and move forward. I have also read many books on brain injuries and educated myself through this journey. The one thing I wish for is a brain injury support group for caregivers. I know I am not alone.

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

Yes. I have become the main parent and disciplinarian, as my husband cannot parent without getting overwhelmed and angry. He has improved, but the children, even as adults, come to me for advice.

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

We both had close friends before my husband’s brain injury. We would go out and socialize and have people over often. Now we still have friends, but we rarely have anyone over to our house. We go out with family once in a while, and my husband has a few friends that will invite him to lunch once a month. It sometimes happens that my husband will not make the most appropriate comment.

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

I am a grandparent now, which brings a new set of challenges. My plans are to continue my education. I am in school to become an ASL (American Sign Language) interpreter for the deaf. I had to go back to work to increase our income just so we could pay the bills. I would love to travel some, but I am not sure if that will ever become a reality, as I have to work full-time.

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

Roxanne Greene – Caregiver

Even though your life has changed, remember you are stronger than you realize. I look back and think of how much I have accomplished and learned about myself during this time. I am not sure I would have gone back to school if my husband had not become ill. Caregivers have been giving a gift that most people never get to experience. We get to see miracles every day as our loved ones fight to improve their lives. It’s a humbling thing to be a part of such a journey.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Caregivers SPEAK OUT!

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Caregivers SPEAK OUT: . . . Author, Abby Maslin

Caregivers SPEAK OUT: Author, Abby Maslin

presented by

Donna O’Donnell Figurski – author

Prisoners without Bars: A Caregiver’s Tale

Caregiver, Abby Maslin – author of “Love You Hard”

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

Abby Maslin

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

Washington, DC, USA

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

My husband, TC, is the TBI (traumatic brain injury) survivor. He was 29 at the time of the assault that caused his 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?

I became my husband’s full-time caregiver on August 18, 2012. I had just celebrated my 30^th birthday.

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

I had a 21-month-old son, named Jack, whom I was also caring for at the time.

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

I was employed as a fourth-grade teacher. TC’s injury occurred the weekend before school started. I was not able to return to work for a year.

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

We had family members who lived nearby and who offered intermittent help. My parents were both ill, however, and unable to help in any large capacity.

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

Immediately. It began as I was tasked with advocating for TC’s medical care.

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

Yes. TC was in a deep coma for about four days, but he took more than two weeks to fully come out of it.

Yes. TC received all the therapies: speech, occupational, and physical. He received occupational and physical therapies for about one year. He received speech for more than two years.

Love You Hard by Abby Maslin

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

TC had severe aphasia (struggles with both expressive and receptive language). He had physical weakness on one side of his body and needed to relearn how to walk. He continues to have limited use of his right hand.

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

It’s really impossible to compare. My life since becoming a caregiver is far more complex and difficult. It’s required a lot of emotional growth and healing to let go of the life I had and the relationship I once shared with my spouse. This new life, however, is far richer in purpose and gratitude than it was before. I have a clearer sense of who I am, what I’m capable of, and how I want to spend my time on earth.

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

I miss the sense of safety I once felt. I miss the easy conversation my husband and I once shared. (His aphasia makes communication much more effortful.)

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

I enjoy the sense of gratitude I live with daily. I can identify and reflect on my blessings with clarity. It’s a wonderful thing to appreciate life as it’s happening.

15. What do you like least about brain injury?

The unpredictability. As a caregiver, I find that it’s difficult to align one’s expectations to the recovery of a loved one, as everything is always in flux and changing.

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

What’s helped me is the recognition that suffering is universal. My family and I were never exempt from life’s challenges and normalizing that experience of hardship has helped me make peace with its existence.

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

Absolutely. While my husband’s personality is mostly unchanged, there are subtle changes that have required us to relearn each other as people. It has shifted the dynamics of responsibility and roles in the household.

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

Yes, at first. But, we were fortunate to have many friends who stuck out the recovery process with us and with whom we still socialize. We are not as social as before, but we also have two young children these days.

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

Praying for continued good health. TC has wonderful healthy habits, but we can’t control the aging process. If all goes well, in ten years, we’ll still be working and living at home with a 14-year-old daughter and a 20-year-old son at college!

Caregiver, Abby Maslin – author of “Love You Hard”

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 forgiving of yourself and your own process of grief. It cannot be rushed. The hand you’ve been dealt is a terribly unfair one, and it is OK to acknowledge the gravity of that fact. Life with brain injury requires persistence, patience, and a lot of hope, but life can be as beautiful and as rich as before.

Stay Safe and Healthy!

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(Photos compliments of contributor.)

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Caregivers SPEAK OUT!

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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.

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

As I say after each post: Please leave a comment by clicking the blue words “Leave a Comment” below this post.

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Caregivers SPEAK OUT!

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Caregivers SPEAK OUT! Bill Duwe

Caregivers SPEAK OUT!

Bill Duwe (caregiver for his son)

presented by

Donna O’Donnell Figurski

Bill Duwe – Caregiver for son, Ray

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

Bill Duwe

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

Broken Arrow, Oklahoma, USA wduwe@cox.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 am Ray’s father. He was 34 when he suffered a brain-stem contusion in a motor-vehicle accident.

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

Ray was released from the hospital on January 27, 2001. We shared caregiving with his wife until November 2001, when Ray moved to our house. My wife and I have been his main caregivers since November 2001. I was 60 years old.

Bill Duwe and his wife – Caregivers for son, Ray

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

No, but my wife’s mother was requiring some assistance. Eventually, we were caring for her and Ray in our home. She passed away in 2007.

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

Yes, I was employed. My employer helped by allowing me to work from home a day or two a week. I worked for 2½ more years. Then it seemed better for me to retire.

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

Absolutely! Currently, I have eighteen volunteers who help with stretching exercises for Ray. I trained these volunteers. We exercise Ray twice a day on a physical therapy table. For seven of those exercise times each week, a volunteer comes to help. Exercise takes about 45 minutes. Some volunteers come once every week; some, twice a month; and some, once every two months – depending on their availability. This does wonders for everyone’s morale – my wife, Ray, the volunteers, and I are all uplifted in spirit.

In addition, I employ a nurse for two hours to bathe, give medicines, help dress, and help exercise Ray twice a week. My wife will have knee-replacement surgery next month, so we will employ this nurse two hours a day, six days a week, during my wife’s recovery. Two of Ray’s children will also come to help us during her recovery.

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

We received ten days of family training on the rehab floor of the hospital before they released Ray. They trained us in physical therapy, occupational therapy, speech therapy, and all daily care. We did most of his care during those ten days.

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

Ray was in a deep coma. He did not respond in any way for one month. He partially opened his eyes exactly one month after the injury. We camped in the waiting room day and night. We took turns going home at night for a shower and an occasional night of sleep at home.

Ray received inpatient therapy during the ten days of family training. After he was released from the hospital, we were able to get various periods of outpatient or home-health therapy for a few years. We have always been directly involved in any therapy.

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

Ray is a non-verbal quadriplegic. He requires complete 24-hour care. Ray’s ability to communicate is very limited. Frequently he can close his eyes for “Yes.” Sometimes he can shake his head for “No.” Occasionally he can smile, but the heavy doses of seizure medications have dulled his ability to show emotion.

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

There have been significant adjustments to our daily life. We made major accessibility accommodations. We have a wheelchair-van. We built a custom accessible home. I would not say life is better or worse. We learned how to adapt. We travel extensively – road trips and cruises. We are able to do what we want – it just takes extra planning and effort. We enjoy going to church, eating out, etc. Ray goes with us. Many of Ray’s friends have connected with us. Ray’s children are close to Ray and us.

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

We very much miss the old Ray.

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

It has provided opportunities to connect with and appreciate Ray’s friends. We enjoy sharing our experiences with other caregivers and friends we make in our travels and with therapy students.

15. What do you like least about brain injury?

The devastation to the survivor and his family

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

Ray’s demeanor indicates he has accepted his injury. Knowing he accepts it helps us accept it.

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

Our marriage is strong. Unfortunately, Ray’s marriage did not survive. Ray’s children are close to Ray and ready to help when needed. We may be closer to his children than we would have been otherwise.

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

We seldom attend church-class parties in a home because it is difficult, or impossible, to get Ray into most homes. Otherwise, we have an active social life. My wife and I each have social activities we attend individually.

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

In ten years, I will be 87. I expect to still be taking care of Ray in our home. I may need more help, but who knows? My health is good. I expect Ray, my wife, and I will be traveling.

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

Make the effort to find support, and work to keep support.
Take care of yourself and your life.
Remember, you know your survivor’s medical history better than any doctor does. Use your knowledge to help the doctor. (For instance, scar tissue in Ray’s lungs may be misinterpreted as pneumonia on an X-ray.)

“We Still Have Him to Love” by Bill Duwe

I have written a book, “We Still Have Him to Love” by Bill Duwe. I wrote it to help other caregivers. It is available on Amazon.com.

As I say after each post: Please leave a comment by clicking the blue words “Leave a Comment” below this post.

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Category:

Caregivers SPEAK OUT!

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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/).”

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.

Babies get brain injury too

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

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.

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

In the hospital

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

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?

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?

support Take care of yourself.

Be surrounded by supportive people.

Educate yourself.

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Comment” below this post.

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Caregivers SPEAK OUT!

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Caregivers SPEAK OUT! . . . . Carol . . . (for her husband, Andy)

Caregivers SPEAK OUT!

Carol (caregiver for her husband, Andy)

presented by

Donna O’Donnell Figurski

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

Carol

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

Toronto, Ontario, Canada

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

Andy is my spouse. He was 53. He was in a motorcycle accident on his way to work.

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

I began care the day of the accident. I was in the hospital every day for eight to ten hours waiting for Andy to wake up. We finally came home after five months. I became his full-time caregiver, and I still am. I was 50; I just turned 52.

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

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

Yes. I was working full-time, but I resigned after the accident.

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

We were lucky to have a full team of therapists. But, we had no support-workers because Andy felt that the people were invading his privacy.

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

Immediately. I was in the hospital every day to give my husband moral support and the healing effect of touch.

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

My husband’s coma was induced. I was in the ICU (intensive care unit) with him all day. Holding his hands. Playing his music. e799afda1f4dee4bd0c8c6e0606325b1

My husband was admitted to rehab for almost three months. It was exceptionally long. But, he was not in a position to benefit from all the therapies. He suffered from seizures, and the medication made him tired. He slept most of the days. I was at rehab with him all day. I tiptoed out for coffee breaks, but I didn’t go far.

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

I help with Andy’s problems with gait, balance, cognitive functions, memory, and emotional lability (involuntary, sometimes inappropriate, emotional displays of mood, which are overly rapid and exaggerated). I take care of meals, finances, housekeeping, and Andy’s soiled beddings. After continuing physio three times a week, Andy found that his gait and balance improved. The problem with his urinary tract got better on its own. I still accompany him to all his therapy sessions because of his memory problem.

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

Life has become simpler. No running after unnecessary things. This gave me the chance to notice more, and I realized that there all lots of kind and helpful people around the community. Our roles changed – I have to deal with the house and finances.

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

We travel together two or three times a year. Andy was the one who used to plan and book the trips and accommodations. I miss him sharing his ideas about everything.

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

Being with him. Seeing the progress every day. Listening to his fears and seeing him happy.

15. What do you like least about brain injury?

A lot of people are not aware of TBI (traumatic brain injury). I myself never heard of it until my husband was diagnosed as having a TBI. It has drastically changed his life. I have to deal with all the house work and repairs. I have to make the final decisions.

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

Yes. Andy used to tell me that there are no regrets in life. Everything is done through our own decisions. We cannot say “What if … ?”

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

Yes. My role is now changed. My two children and I miss Andy’s ideas, suggestions, and guidance.

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

Yes. I have become overprotective. I don’t want to leave my husband alone. My friends are all working, so not only is there no time to meet, but it’s also not easy for me to leave the house without him.

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

I would love to volunteer and help other people.

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 patient; time heals. It’s a learning process to both the survivor and the caregiver. And, it’s absolutely worthwhile! It changed my perspectives in life.

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Comment” below this post.

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Surviving Traumatic Brain Injury

TBI – Survivors, Caregivers, Family, and Friends

Archive for the ‘Caregivers SPEAK OUT!’ Category

Caregivers SPEAK OUT! . . . Norma Myers ~ Author, Advocate, & Mom

Caregivers SPEAK OUT! . . . . Jenifer Fallert

Caregivers SPEAK OUT! . . . . Greg Payan – Author

Caregivers SPEAK OUT! . . . Drew Niemann

Caregivers SPEAK OUT! . . . . Roxanne Greene

Caregivers SPEAK OUT: . . . Author, Abby Maslin

Caregivers SPEAK OUT! Harriet Hodgson – Caregiver and Author

Caregivers SPEAK OUT! Bill Duwe

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

Caregivers SPEAK OUT! . . . . Carol . . . (for her husband, Andy)

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