Caregivers SPEAK OUT! Ann Castro Baker
Donna O’Donnell Figurski
1. What is your name? (last name optional)
Ann Castro Baker
2. Where do you live? (city and/or state and/or country)
Plainview, 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?
My TBI (traumatic brain injury)/stroke survivor is my 23-year-old son, Jesus Castro Hanson. Undiagnosed high blood pressure was the cause of this nightmare. His injury left him with severe brain damage and a limp, and his arm is still numb and just hangs. He spent 29 days in the ICU (intensive care unit). He was in a coma for almost two weeks … and he “died” three times.
4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?
I have been by Jesus’ side since the day it started, which was this past April 3rd. I am the main and only caregiver. I turned a year older in July, so now I am 47.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
I was helping my mother care for my 84-year-old father, who has dementia. I am no longer able to give her breaks. Now we both are exhausted.
6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?
7. Did you have any help? If so, what kind and for how long?
My son has a nurse who comes to see him about once or twice a month. But the nurse only checks vitals and asks questions.
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
I have been by my son’s side since the day it began.
9. Was your survivor in a coma? If so, what did you do during that time?
My son was in a coma for two weeks. I had received my BA degree in ‘14, but I have had serious health issues of my own. My son was taking care of me until this happened.
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 your survivor was getting therapy?
Jesus was a patient at a place known as Trustpoint Rehabilitation Center, and I got to stay with him. (When I stated I never left his side, I meant it!) There he received physical, occupational, and speech therapies. On the day we left, he took his first steps on his own. It was a proud and emotional moment for all.
11. What problems or disabilities of your brain-injury survivor required your care, if any?
Jesus needs help doing particular tasks, like holding things, opening things, and sometimes pouring things. He can dress, feed, and shower himself after relearning how to. His brain damage is severe – you can’t make instructions long and hard. Sometimes even if the instructions are short, he is still not able to do it. His short-term memory is non-existent, but surprisingly his long-term memory is on point.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
I hate saying “for the worse,” but my life is at a standstill. I watch over my son 24/7, with no breaks. We had been quarantined to our home for two months because of his catching C. diff (the bacterium Clostridium difficile – one of the most important causes of infectious diarrhea in the U.S.) again. He is finally done with the Dificid (Fidaxomicin – an antibiotic), so we are now beginning to go for walks – nothing too far because he will get tired and will trip a lot.
13. What do you miss the most from pre-brain-injury life?
I miss leaving the house and not worrying about leaving Jesus alone. Now I have to make sure he is with me at all times. We can’t stay long because he either gets tired or annoyed from all the lights and noise. So I guess you could say I miss my freedom.
14. What do you enjoy most in post-brain-injury life?
I am relearning my son. I often say I lost my son in the ICU, and this young man is Jesus in the outer shell, but on the inside, he is a stranger … who I am beginning to know. Sometimes, my son wakes up, and he seems like he is six years old – and those days can be refreshing because of his sweet innocence. Other days, he will wake up as his 23-year-old self – some days are good, while others are just plain horrible because of his temper (which is new; he never really had a temper like this before).
15. What do you like least about brain injury?
I mostly have a hard time with my Jesus’ temper. I do not like arguing with my son … but, then again, it is his frustration as well. It tears at my heart. This brain injury really altered my son’s life forever. It is tough on him and on me.
16. Has anything helped you to accept your survivor’s brain injury?
Yes – his scar. I know that may be a weird answer, but those days when he is either clueless or starts to yell at me, I look at his scar and automatically soften. I know he doesn’t mean it. He has been through so much for his age.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
I really do not have friends. I think some people are afraid to approach him because of his scar and his mentality now. Family members are good about it. But some people just sit back and stare. It has been different for all of us. I am still single. I recently started a long-distance relationship (very long distance, another county as a matter of fact) and it is going well. My son is happy to see the light back in my eyes.
18. Has your social life been altered or changed and, if so, how?
Social life? What is that exactly? I go nowhere. I only go out once a month to pay bills … and then back home to my son. I did mention we are starting to go on walks, so the fresh air is wonderful for both of us.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I have faith that in ten years my son will be much better. I hope it will not happen again. I monitor his vitals three times a day. I make sure he eats right and exercises, gets plenty of sleep, and drinks enough water. I would hope that ten years from now my son will be able to be on his own. That is a long time … if he needs my help, I will be at his disposal. I gave him my word that I would not leave him until he was back to somewhat normal. He still has a long road ahead of him.
20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?
If there is a support-group in your town or close enough for you to go to, GO! I do not have that option, but I would love it if there were a support-group for the both of us here. If you must cry, cry in the shower … no one can tell! (Just say you got shampoo in your eyes.) Never lose your temper or let your survivor see you get that way. Even if you need to walk away for a minute or two to collect yourself, then do so and go back. Many people find God and pray – that seems to help them. SING! SING! SING! Music does wonders!
(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.
(Clip Art compliments of Bing.)
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