Caregivers SPEAK OUT! – Jessica Fell
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)
Mobile, Alabama, USA firstname.lastname@example.org
3. What is the TBI survivor’s relationship to you? How old was the survivor when he/she had the TBI? What caused your survivor’s TBI?
The survivor was my boyfriend of four years, now my husband. We just got married on New Year’s Eve, his birthday. Daniel was 29 when he got his TBI. He was driving to work on his motorcycle, and a truck turned into a driveway without yielding. Daniel had no time to stop, slow down, or swerve. He collided with the truck.
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 never left the hospital. There wasn’t a single day in the two months Daniel was in the hospital that I didn’t stay the night with him. Initially I was waiting for him to “wake up” from his coma. I am, and have been, Daniel’s only caregiver. We lived together with my two little girls. I stopped working to take care of him at home, instead of having him go to a rehab hospital. I was 27 when he was injured. I turned 28 while he was in the hospital.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
I was caring for my two children. I still do now.
6. Were you employed at the time of your survivor’s TBI? If so, were you able to continue working?
I continued to work until a few days before Daniel was released from the hospital. I do not work now.
7. Did you have any help? If so, what kind and for how long?
I had no help at all. Daniel’s family came into town every weekend, but they did not stay at our home.
8. When did your support of the survivor begin (e.g., immediately – in hospital, when the survivor returned home, etc.)?
9. Was your survivor in a coma? If so, what did you do at that time?
Daniel was in a coma for nineteen days. I stayed by his side constantly waiting for him to wake up.
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?
Daniel had rehab in the two-month period that he was in the hospital. He only had physical therapy afterwards – once a week. He has not yet started any other therapy.
11. What problems or disabilities of your TBI survivor required your care, if any?
The only thing Daniel needs me for now is driving. I did have to help with his walking, showering, and getting dressed. But, he’s fully capable of those things now.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
I have had to grow up a lot and learn to be more patient. It’s not better because I would like to be working now and to still be doing outgoing things with him. But, I am hopeful that he’ll get back there soon. It’s not worse because our relationship is so much better than it’s ever been.
13. What do you miss the most from pre-TBI life?
I miss Daniel’s crazy, spontaneous personality. I miss his being so full of life. He’s still very funny, and he loves to laugh. But, he can’t hang for long, and he gets very anxious and worried so easily.
14. What do you enjoy most in post-TBI life?
I enjoy that our loyalty to each other is so much stronger. I am happy that Daniel has calmed down some.
15. What do you like least about TBI?
I dislike the anxiety Daniel has, his memory’s not being as good, and sometimes his temperament.
16. Has anything helped you to accept your survivor’s TBI?
I believe I have come to accept Daniel’s TBI through God and family and by trusting each other. I’ve come a long way.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
Daniel and my mom no longer speak because she doesn’t understand. It makes it difficult for me to balance their time together and ours.
18. Has your social life been altered or changed and, if so, how?
I can’t leave the house without worrying that Daniel is going to be OK or wants me to come home. I feel guilty that he’s not with me.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I hope that we are both back at work and in our own home, which we hope to purchase one day. I hope we have a child together.
20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?
My main advice is to never, ever give up. Don’t let TBI take away your life. Don’t let it destroy your relationship. It shouldn’t just be the survivors who are forced to change. The survivors might not have control, but you can change how you handle yourself when it comes to certain things. We have to adapt to this new person and learn to love him or her again. The survivor deserves love and needs it. Be dedicated. Be a believer in yourself and in your survivor because spirituality does take you a long way in this journey. God puts you in situations for a reason – to learn from them. Find out your reason; learn from it; let go and let God. He will get you through any situation he places you in. Trust and believe in that and in yourself.
Thank you, Jessica, 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 Jessica.)
Disclaimer: The views or opinions in this post are solely that of the interviewee.