Caregivers SPEAK OUT! . . . . . Kristina Hopkins
Caregivers SPEAK OUT! – Kristina Hopkins
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)
Blum, Texas, 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 survivor, Tom, is my husband. He was 25 years old when he got a moderate to severe TBI.
Tom was on his last of four deployments to Iraq. His camp came under attack, and the building he was working in shook because it was hit. He got hit in the head, we believe, and they found him on the floor. He has damage to the occipital and frontal lobes of his brain. His autonomic and limbic systems were also damaged. Those are the systems that make the body feel and move. Tom does not feel over 60% of his body, and he is losing the use of his legs.
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 began taking care of Tom in early 2008. I am the main and only caregiver. I believe I was 31.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
I was caring for two daughters, one with Asperger’s Syndrome.
6. Were you employed at the time of your survivor’s TBI? If so, were you able to continue working?
I was working, but that changed.
7. Did you have any help? If so, what kind and for how long?
I didn’t have any help. Tom does have a TBI service-dog. The dog, Duke, let’s him know every morning whether he will be walking or rolling in his wheelchair.
8. When did your support of the survivor begin (e.g., immediately – in hospital, when the survivor returned home, etc.)?
Tom started receiving partial help in 2008, and then he received full-time medical help in 2009.
9. Was your survivor in a coma? If so, what did you do at that time?
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?
Tom received physical therapy, memory therapy, and occupational therapy. All therapies were outpatient, except for the physical therapy. For that therapy, the therapists came into our home. Since moving to Texas two and a half years ago, I have taken over all of Tom’s therapy.
11. What problems or disabilities of your TBI survivor required your care, if any?
I assist Tom on all his ADLs (Activities of Daily Living). Tom cannot cook, so I do that. I handle the finances, with Tom’s help. I am the main driver. I am his therapist, whether it is physical or occupational therapy. I handle all appointments, i.e., I’m Tom’s “personal assistant.” (LOL)
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
My life has changed. I cannot say if it’s for the better or for the worse. We have learned to overcome Tom’s injuries and to adapt to them. It’s a lonely life at times, but I would not change my life. I am truly honored to be married to my husband.
13. What do you miss the most from pre-TBI life?
I miss making plans a month or more into the future. We can’t do that now.
14. What do you enjoy most in post-TBI life?
EVERY day is different. It can be exciting. Case in point – our Thanksgiving this year.
15. What do you like least about TBI?
I don’t like that people look at Tom as if nothing is wrong. They need to walk a day in his shoes or mine. Then they can decide.
16. Has anything helped you to accept your survivor’s TBI?
I had to accept Tom’s TBI right away. There was no time not to.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
Yes. We don’t go “out” as much. We cannot make plans for the distant future. We just take one day at a time.
18. Has your social life been altered or changed and, if so, how?
What’s a “social life”? (LOL) We do get out now and then, but not often.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I cannot answer this question about my plans for ten years from now. I have no clue. We don’t plan that far in advance. In ten years, hopefully our daughters will be in college or in the military or just getting out. As for the two of us, my hope is to be where we are at now – taking it one day at a time.
20.What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?
Good question. I guess to answer that question would depend upon whom I am talking with. Not every caregiver is at the same stage. So my advice varies. I guess all I can say now is this: YOU ARE NOT ALONE.
Thank you, Kristina, 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 Kristina.)
Disclaimer: The views or opinions in this post are solely that of the interviewee.