Caregivers SPEAK OUT! Bob Millsap
Donna O’Donnell Figurski
1. What is your name? (last name optional)
2. Where do you live? (city and/or state and/or country)
Glendale, Arizona, 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 wife, Shelly, is the brain-injury survivor. She was 46. It happened because of a freak accident in our home – a bottle of homemade ginger-ale exploded just as Shelly walked by. It broke her nose and bruised her face, but the TBI (traumatic brain injury) symptoms did not become apparent for two weeks.
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 began care on January 17, 2013. I was 45. I was then and am now Shelly’s main caregiver.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
Yes. Our boys were 12 and 18 at the time.
6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?
Yes. I worked many hours. I had an employer who was not very understanding. This was very challenging. It made me re-evaluate things career-wise.
7. Did you have any help? If so, what kind and for how long?
No. We lived at the time in Victor, Idaho (near Jackson Hole, Wyoming). We were in a very rural area. There was no family support near us.
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
My support started once my wife’s TBI symptoms became apparent.
9. Was your survivor in a coma? If so, what did you do during that time?
Shelly was unconscious for twenty minutes.
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?
Shelly had to relearn to walk and talk. She worked with a couple of alternative
providers that we will always be thankful for. She continues to do home therapy.
11. What problems or disabilities of your brain-injury survivor required your care, if any?
Shelly has severe PTSD (post-traumatic stress disorder), so I help any way possible for this. I try to keep daily life as simple and consistent as possible, with constant support and advocacy. I do the driving and I manage her medications.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
It hurts so much to witness Shelly live this every day. But I am more patient and understanding as a person. I don’t sweat the small things as I used to.
13. What do you miss the most from pre-brain-injury life?
I miss Shelly’s being able to live life without fear.
14. What do you enjoy most in post-brain-injury life?
I like that the deep bond in our immediate family has strengthened.
15. What do you like least about brain injury?
I dislike knowing that Shelly must face challenges every day.
16. Has anything helped you to accept your survivor’s brain injury?
Dealing with this has been made possible by our faith in God, our love for each other, and Shelly’s AMAZING outlook. I never see her feeling sorry for herself. It’s amazing and inspiring.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
Our relationship is stronger than ever. It has really given us perspective on what is important. Our two boys are very compassionate and understanding. I am very proud of how they handle this.
18. Has your social life been altered or changed and, if so, how?
We moved back to Arizona earlier this year, and that has been great for Shelly! It was lonely for her in rural Idaho, even before the accident. Some of her friends have been
GREAT once she got back here. Others … not so much. We try to make
sure to stay out of loud, chaotic, or unpredictable situations. We adjust to our new normal. Shelly’s TBI is truly an invisible injury, so some friends and family understand … some do not.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I would love to see Shelly be able to have a rewarding, peaceful life outside of the home. She is such a kind and helpful person. I always believe there is a way that her experience with TBI and PTSD can greatly help others.
20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?
Take one day at a time. Be patient. Ask questions of the medical and rehab communities. Search for answers. Try not to ask “Why me?” and feel sorry for yourself. Rid yourself of negative situations and negative people. Be flexible and have thick skin. Find support-groups to become involved with.
(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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