Caregivers SPEAK OUT! Diane Caldwell
SPEAK OUT! – Diane Caldwell
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)
Columbus, Ohio, USA email@example.com
3. What caused your survivor’s TBI?
Car accident – Sept. 24, 2010
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?
I started caring for my daughter after she was sent home from Dodd Hall, OSU, an In-patient rehabilitation facility, in December 2010. I was 53 years old. My daughter was 28.
5. Were you caring for anyone else at that time? (e.g., children, parents, etc.)
Yes. I was caring for my grandson – my daughter’s son.
6. Were you employed at the time of your survivor’s TBI? If so, were you able to continue working?
Yes. I was employed and somehow managed to keep my job, mainly because I have had the same employer for a 20-plus years. My daughter still required 24×7 care, but I was able to work from home for about 6 months until she could be left alone at home. She was bed-ridden and wheelchair-bound during that time.
7. Did you have any help? If so, what kind and for how long?
No. Occasionally her brother would stay with her while I went to the store, but her behavior was a little scary to him (i.e., she would be talking coherently one minute, and the next she wouldn’t know who he was).
8. When did your support of the survivor begin? (e.g., immediately – in hospital, when survivor returned home, etc.)
Immediately. She was life-flighted from the accident scene and was on life support in critical condition for several days. I went to the hospital daily.
9. Was your survivor in a coma? If so, what did you do at that time?
Yes. I went to the hospital every day, but at that time, the doctors thought she had a slim chance of making it. I still cared for my grandson. I prayed.
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? Where were you when this was happening?
Yes. She had In-patient rehab (occupational, physical, and speech therapy), and then she had Out-patient rehab when she was sent home. Her rehab totaled about 5 months. I usually went with her to her appointments, as she required special transportation (due to the wheelchair) and was often left waiting for a return ride home. She was afraid to be left alone.
11. What problems or disabilities of your TBI survivor required your care, if any?
Short-term memory problems, emotional swings and instability, suicidal actions, personal safety issues
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
My life is just different now. Some things are better, some things worse. My life changed dramatically, as I was living alone previously. We walked through some dark days together, so it was very rough at first. My daughter’s personality changed, and her IQ dropped into the mildly retarded range. My daughter knew she was not who she used to be, and she didn’t embrace who she was after the accident for about 18 months. Today, my life is better. My relationship with my daughter has reached a depth most people never get to experience. I learned a lot about myself too, and I became a much more spiritual person. I believe in miracles!
13. What do you miss the most from pre-TBI life?
Time to myself, freedom to travel
14. What do you enjoy most in post-TBI life?
15. What do you like least about TBI?
How it impacts relationships. For a while, I felt like I lost my daughter, even though she was alive. Everyone works through it differently.
16. Has anything helped you to accept your survivor’s TBI?
Yes. I got connected with OSU TBI Network.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
Yes. My daughter and grandson live with me and rely on me as a result of the TBI. It’s like being a single mom again.
18. Has your social life been altered or changed and, if so, how?
Yes. I am unable to attend functions where I will be away overnight. I don’t like leaving my daughter alone since she started having seizures.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I guess I don’t really think about that too much. I would like to be retired by then and do some fun things with my daughter and grandson.
20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?
Don’t isolate yourself! Learn as much as you can about TBI. Reach out for help. (I didn’t do that enough.) Be patient, loving, and caring. Take it one day at a time.
Thank you, Diane, 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 Diane.)
Disclaimer: The views or opinions in this post are solely that of the interviewee.