Caregivers SPEAK OUT! . . . . . Trisha
SPEAK OUT! – Trisha
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)
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?
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.
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.