SPEAK OUT! – Trish Herzog
Donna O’Donnell Figurski
1. What is your name? (last name optional)
2. Where do you live? (city and/or state and/or country) Email? (optional)
Platte City, Missouri, USA firstname.lastname@example.org
3. What caused your survivor’s TBI?
An auto-racing accident
4. On what date did you begin care for your TBI survivor? Are you the main caregiver? How old were you when you began care?
June 6, 1998 I was the main caregiver. I was 33.
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 TBI? If so, were you able to continue working?
No. I was a housewife.
7. Did you have any help? If so, what kind and for how long?
Yes – in-home caregivers for 11 years, until my husband passed away in 2009 as a result of complications from his TBI.
8. When did your support of the survivor begin? (e.g., immediately – in hospital, when survivor returned home, etc.)
Immediately – in the hospital
9. Was your survivor in a coma? If so, what did you do at that time?
Yes – for 6 days. I cried, prayed, journaled, and read books and pamphlets about TBI to educate myself about the condition as much as possible.
10. Did your survivor have rehab? If so, what kind of rehab? (i.e., In-patient and/or Out-patient and Occupational, Physical, Speech, and/or Other) How long was the rehab
In-patient for 3 months
Out-patient for over a year and off and on, as needed in the years
Where were you when this was happening?
I was with my husband during most therapies, except for speech. They suggested against my being there, as I was too much of a distraction for him. He didn’t filter things as well after he suffered the TBI.
11. What problems or disabilities of your TBI survivor required your care, if any?
My husband was full-care. He was paralyzed from the waist down and remained in a wheelchair for the remaining 11 years of his life. He suffered memory issues and speech dysphasia issues initially. His motor skills were also affected. He had significant spasticity in his legs. He had a shunt put in due to hydrocephalus. He suffered a few strokes after his TBI over the years. We spent quite a bit of time in and out of the hospital for various infections and health issues
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
My husband died in 2009. I cared for him and managed his care in our home from 1998-2009. It was exhausting at times, but I wouldn’t have had him anywhere else. After he passed, it was quite an adjustment period for me. Losing him and losing the chaos of daily life, with therapists and caregivers in your home, was quite the change
13. What do you miss the most from pre-TBI life?
I missed our intimacy. We were still able to cuddle and be affectionate, but I became the stronger role in our relationship after he was injured. I missed my protector, my confidante, etc. We still had that together, but the dynamic was somewhat changed. He was still my best friend.
14. What do you enjoy most in post-TBI life?
I can’t explain how, because my husband was my best friend and we were so close, but, in the years after he was injured, we became even closer at deeper levels. We were in this together, and we fought the battles of day-to-day TBI life together.
15. What do you like least about TBI?
It took away the husband I loved and married and left me with a different one. I loved him just as much, but in some ways very differently.
16. Has anything helped you to accept your survivor’s TBI?
We saw humor in so many things on a day-to-day basis. You have to find the humor in the basic things. Our general positive outlook on life and love for each other helped us survive and thrive in the shadow of TBI.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
It changed our dynamic completely. I took on more of a motherly role with my husband. My parents, seeing everything I was dealing with and managing, developed a greater respect and appreciation for me as an adult and not just as their little girl. I was making life-and-death decisions and handling rather scary things.
18. Has your social life been altered or changed and, if so, how?
Yes. It was isolating, to a certain extent. Life moves on for others after the initial traumatic occurrence, but you are still dealing with the day-to-day of your new TBI life. The real friends and family will hang around. You find out who your diehard friends are.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I am doing it now. As I said, my husband died in 2009. I have been rediscovering who I am for over four years now. It’s still a process. I was a caregiver for so many years. It was who I was, and when he passed away, my entire purpose and reason for existence went away too. I had to figure out what I wanted to do with my life and re-invent myself…solo. It’s an ongoing process.
20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?
You have to take care of yourself. If you are going to be in it for the long haul, respite is a must! In the years of dealing with a loved one with a TBI, there were ups and downs, sadness, laughter, eureka moments, and exhaustive moments. It was all worthwhile, every minute of it. I am a far better person today because of the hand my husband and I were dealt back in 1998. I have a much greater appreciation for many things we often take for granted – life, love, health, all of them. I miss my husband, and I wish I still had him with me…TBI or no TBI.
Thank you, Trish, 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 Trish.)
Disclaimer: The views or opinions in this post are solely that of the interviewee.