Caregivers SPEAK OUT: Author, Abby Maslin
Donna O’Donnell Figurski – author
Prisoners without Bars: A Caregiver’s Tale
1. What is your name? (last name optional)
2. Where do you live? (city and/or state and/or country) Email? (optional)
Washington, DC, 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 husband, TC, is the TBI (traumatic brain injury) survivor. He was 29 at the time of the assault that caused his injury.
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 became my husband’s full-time caregiver on August 18, 2012. I had just celebrated my 30th birthday.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
I had a 21-month-old son, named Jack, whom I was also caring for at the time.
6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?
I was employed as a fourth-grade teacher. TC’s injury occurred the weekend before school started. I was not able to return to work for a year.
7. Did you have any help? If so, what kind and for how long?
We had family members who lived nearby and who offered intermittent help. My parents were both ill, however, and unable to help in any large capacity.
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
Immediately. It began as I was tasked with advocating for TC’s medical care.
9. Was your survivor in a coma? If so, what did you do during that time?
Yes. TC was in a deep coma for about four days, but he took more than two weeks to fully come out of it.
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?
Yes. TC received all the therapies: speech, occupational, and physical. He received occupational and physical therapies for about one year. He received speech for more than two years.
11. What problems or disabilities of your brain-injury survivor required your care, if any?
TC had severe aphasia (struggles with both expressive and receptive language). He had physical weakness on one side of his body and needed to relearn how to walk. He continues to have limited use of his right hand.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
It’s really impossible to compare. My life since becoming a caregiver is far more complex and difficult. It’s required a lot of emotional growth and healing to let go of the life I had and the relationship I once shared with my spouse. This new life, however, is far richer in purpose and gratitude than it was before. I have a clearer sense of who I am, what I’m capable of, and how I want to spend my time on earth.
13. What do you miss the most from pre-brain-injury life?
I miss the sense of safety I once felt. I miss the easy conversation my husband and I once shared. (His aphasia makes communication much more effortful.)
14. What do you enjoy most in post-brain-injury life?
I enjoy the sense of gratitude I live with daily. I can identify and reflect on my blessings with clarity. It’s a wonderful thing to appreciate life as it’s happening.
15. What do you like least about brain injury?
The unpredictability. As a caregiver, I find that it’s difficult to align one’s expectations to the recovery of a loved one, as everything is always in flux and changing.
16. Has anything helped you to accept your survivor’s brain injury?
What’s helped me is the recognition that suffering is universal. My family and I were never exempt from life’s challenges and normalizing that experience of hardship has helped me make peace with its existence.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
Absolutely. While my husband’s personality is mostly unchanged, there are subtle changes that have required us to relearn each other as people. It has shifted the dynamics of responsibility and roles in the household.
18. Has your social life been altered or changed and, if so, how?
Yes, at first. But, we were fortunate to have many friends who stuck out the recovery process with us and with whom we still socialize. We are not as social as before, but we also have two young children these days.
19. What are your plans? What do you expect/hope to be doing ten years from now?
Praying for continued good health. TC has wonderful healthy habits, but we can’t control the aging process. If all goes well, in ten years, we’ll still be working and living at home with a 14-year-old daughter and a 20-year-old son at college!
20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?
Be forgiving of yourself and your own process of grief. It cannot be rushed. The hand you’ve been dealt is a terribly unfair one, and it is OK to acknowledge the gravity of that fact. Life with brain injury requires persistence, patience, and a lot of hope, but life can be as beautiful and as rich as before.
Stay Safe and Healthy!
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(Photos compliments of contributor.)
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