Caregivers SPEAK OUT! Lynn Sandoval
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)
Brady, Texas, USA
3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?
The brain-injury survivor is my husband. He was 39 years old when he had the brain injury. He was in an automobile accident. His car was hit twice, once head-on. The first car hit my husband’s car at ~95 mph. This hit spun my husband’s car around, and a second car, following the first car, hit my husband’s car in the rear at ~85 mph. My husband’s car was spun back around and finally came to a rest in the middle of the road.
4. On what date did you begin care for your brain-injury survivor?
I began care the day after my husband’s accident – when I was able to get to the hospital where he had been flown.
Were you the main caregiver?
In the beginning, my husband had hospital care in addition to mine.
Are you now?
I have been my husband’s only caregiver since he came home from the hospital.
How old were you when you began care?
I was 52.
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 brain injury? If so, were you able to continue working?
Yes, I was employed. I have been able to utilize FMLA (Family and Medical Leave Act) and sick leave. I have continued working whenever I am able to.
7. Did you have any help? If so, what kind and for how long?
I have not had any help at home caring for my husband.
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
My support began in the hospital, and it continues to this day.
9. Was your survivor in a coma? If so, what did you do during that time?
My husband was in a coma the first few days. While he was in a coma, I stayed by his bedside and talked to him. I touched him on the areas that weren’t bandaged to let him know I was there.
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)?
My husband had physical, speech, and occupational therapies in the hospital. They continued when we got home, once I got him set up for evaluations.
How long was the rehab?
My husband is still in physical therapy, and he recently started occupational therapy again. (He had “graduated” from occupational therapy about a year ago, but his neurologist requested that he do it again.)
Where were you when your survivor was getting therapy?
I was there with my husband during the beginning therapies, but after some time, he went to the therapies alone. Now we work together on exercises at home.
11. What problems or disabilities of your brain-injury survivor required your care, if any?
Now my husband is able to do things for himself, but I still have to get his medications together for him every day because he doesn’t remember if he’s taken them or not.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
Since I’ve become a caregiver, I have discovered that people will withdraw from situations because they don’t understand TBI (traumatic brain injury). It has its ups and downs, but we are now seeing more positive steps and are hopeful for the future. I have found that I am more depressed and feel alone because I am more involved with making sure everything is OK for my husband, but I am learning to take time for me.
13. What do you miss the most from pre-brain-injury life?
Life before my husband’s TBI was a lot less stressful – being able to leave the house and not worry if he is OK. Now I keep my phone with me continuously so that, if he needs something, he can call and I’ll be there for him.
14. What do you enjoy most in post-brain-injury life?
I am grateful that I still have my husband with me.
15. What do you like least about brain injury?
I dislike the frustration and confusion that my husband feels when he is trying to remember something and he can’t.
16. Has anything helped you to accept your survivor’s brain injury?
Yes – support-groups and reading – and more reading – on anything and everything I can find about TBI and about what can and can’t be beneficial – not only for him, but for us and our relationship.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
Yes. I find I am hyper-aware of anything and everything my husband does in an effort to keep him safe. The relationships with his family and friends have become nonexistent. It hurts my husband so much to feel that no one cares about him.
18. Has your social life been altered or changed and, if so, how?
Yes. We don’t go out much anymore because my husband doesn’t like being in large, noisy crowds and because it is difficult for him to stand or walk for extended periods of time.
19. What are your plans? What do you expect/hope to be doing ten years from now?
My husband’s plans are to hopefully get approved for disability insurance and then to return to his job (that they are holding for him) part-time so that he can financially contribute to our family. My plans, if we are able to get some additional income instead of just mine (which has been our income for almost the last two years), would be to find a job to use my Master’s Degree. I just completed my degree program this past year in psychology. I’d like to work with other traumatic-brain-injury survivors and help advocate for them. Here in our small town, nothing is available.
20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?
I would say that, despite the difficulties in being a caregiver, caregiving can be rewarding – when together you see the progress your survivor is making because of his or her drive and determination and because of the support and love that you give him or her. It is tiring, it can be frustrating, and you may feel like screaming – these are all normal responses. The key is to remember to take a moment, to try to take care of yourself (this is the hardest thing), and to believe in each other.
(Disclaimer: The views or opinions in this post are solely that of the interviewee.)
If you would like to be a part of the SPEAK OUT! project, please go to TBI SPEAK OUT! Caregiver Interview Questionnaire for a copy of the questions and the release form.
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