Caregivers SPEAK OUT! . . . . . Christina WIlliams
Caregivers SPEAK OUT! – Christina Williams
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)
Pine, Colorado, 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?
The TBI survivor was my fiancé. His TBI was caused by a motor vehicle accident. He was 37. I want to add that it was in 2008, so it happened more than six years ago.
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 was at the scene of the accident. I was his main caregiver; I still am now. I began care as soon as I could. I was 47 when the accident happened.
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?
I worked with my fiancé in our own business – building custom homes, decks, basements, bars, etc. We also designed and created log furnishings on the side. When he got hurt, I was unable to continue working. I lost my job because I assisted him. We lost both businesses.
7. Did you have any help? If so, what kind and for how long?
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?
Yes, my fiancé was in a coma. I sat at his bedside, cried, and prayed a lot. I NEVER left the hospital for 72 days. I finally did after he was transferred to the rehab hospital.
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 fiancé was accepted to Craig Hospital in Denver, Colorado, (one of the top ten rehabilitation facilities in the US for spinal cord and brain injuries) for intensive physical, occupational, and speech therapies. He also had group therapy, recreational therapy, and swim therapy. I was with him every day. I had to be there before breakfast to help dress and feed him and to get him to his daily “classes.” He remained an inpatient for three and a half months. He then became an outpatient. I took him to therapy three times a week at first. Over time, it decreased to one or two times a week. After about sixteen months, we no longer went. We still continue to go back to Craig Hospital for specialized therapies for issues he has had since the accident. The last one was vestibular therapy for vertigo symptoms. But, they couldn’t treat it, so they worked on his balance issues.
11. What problems or disabilities of your TBI survivor required your care, if any?
He has epilepsy due to his TBI, so he requires supervision 24/7. He can never be left alone. Because of seizures and balance issues, he has frequent falls and injuries that require medical attention and trips to the Emergency Room. He can’t drive or work. He requires prompting for many of daily living skills, including hygiene, which is a huge issue.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
Both our lives have changed drastically. Our lives are worse, since we can’t have the “normal” life together that we expected. We now realize that we took our lives for granted. Buying a home or a new car and taking vacations are no longer possibilities in our lives.
13. What do you miss the most from pre-TBI life?
I miss the freedom and having hope for the future.
14. What do you enjoy most in post-TBI life?
I enjoy spending time with him every day. Every day is NOT “sunshine and roses,” but we make the best that we can out of every day. He is simply amazing. I look at him and watch him in awe, as he does whatever he does. I have a saying: “Let’s just hope today is better than yesterday.” It helps us focus on the positives in every day.
15. What do you like least about TBI?
I dislike that the TBI has destroyed such a good person and his future. We also lack the money and the ability to do whatever we want.
16. Has anything helped you to accept your survivor’s TBI?
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
We were officially engaged two days before the accident. We were SO in love and excited to be planning our future. Since his injury, his emotions (or I should say “ his lack of emotions”) and his poor judgment have caused us many, many problems.
18. Has your social life been altered or changed and, if so, how?
We have no social life. ALL our “friends” vanished after he was hurt. Our social life is whatever we do in our day. When he has a doctor or therapy appointment, we plan a whole day in the city together.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I don’t have any hopes or plans anymore. We just take it a day at a time. In ten years, I imagine that we will still be doing what we’re doing now, but perhaps in a different house.
20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?
Turn to Facebook for support, especially the TBI pages. You may not know the people, but they have been a constant and great support not only to me, but also to so many others – survivors, caregivers, and their families and friends. It’s nice to read the stories of others and to share comments and advice. When my fiancé was hurt, I wasn’t using Facebook. It would have been so nice just to know that I wasn’t alone in my journey. Facebook is my “human” outlet for support. I have also come to find out that I can help others. That is more rewarding to me than I can say.
I think what I would want people to know that they aren’t prepared for is that it is VERY common for TBI survivors to start having seizures a year or so after the injury. It was something we weren’t prepared for, or even thought could happen. He was on anti-seizure meds while in rehab, but there was “no seizure activity.” So, they took him off the medication, and I thought it would never be a concern. Boy, was I wrong!
Thank you, Christina, 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 Christina.)
Disclaimer: The views or opinions in this post are solely that of the interviewee.