Caregivers SPEAK OUT! . . . . . . . . . Marleen Salo
SPEAK OUT! – Marleen Salo
Donna O’Donnell Figurski
1. What is your name? (last name optional)
Marleen Salo (Marty’s Mom)
2. Where do you live? (city and/or state and/or country) Email? (optional)
Lutz, Florida, USA firstname.lastname@example.org
3. What caused your survivor’s TBI?
A car hit my son while he was crossing a street on his bicycle.
4. On what date did you begin care for your TBI survivor? Are you the main caregiver? How old were you when you began care?
April 1982 36 years old
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 TBI? If so, were you able to continue working?
I was employed as a Registered Nurse. I took several weeks off and then returned to work per advice from professional friends.
7. Did you have any help? If so, what kind and for how long?
My husband (Marty’s father) and I were co-caregivers. Physical therapists, school tutors, and friends assisted at intervals.
8. When did your support of the survivor begin? (e.g., immediately – in hospital, when survivor returned home, etc.)
Upon Marty’s discharge from the hospital
9. Was your survivor in a coma? If so, what did you do at that time?
He was in a coma for 7 1/2 weeks. We stayed with him for long hours at the hospital. We went home to sleep, bathe, eat, etc.
We brought him home in semi-coma. We fed him, bathed him, and helped him do exercises in bed. He was bedridden for the first few weeks at home. He then used a wheelchair. Eventually he walked with assistance; then he walked unsupported. By fall, he was able to walk into classroom at a private school, with lots of school support.
10. Did your survivor have rehab? If so, what kind of rehab? (i.e., In-patient and/or Out-patient and Occupational, Physical, Speech, and/or Other) How long was the rehab? Where were you when this was happening?
Doctors told us to place him into a nursing home. His pediatrician advised us to set up a “hospital bed” at home and have the physical therapist make home visits. There was no In-patient rehab.
11. What problems or disabilities of your TBI survivor required your care, if any?
Feeding, bathing, moving from bed to chair, exercises to legs and feet
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
It’s hard to answer. I learned that it is possible to come through such trauma stronger and more aware of the precious entity that is life. I learned how many people come around in support at times of crisis.
Worse, in that I worried more about every aspect of Marty’s life. Worse, when I saw him struggle in daily activities and when he had to prove himself over and over in every grade level of school. Heartaches, when he could not achieve a goal.
13. What do you miss the most from pre-TBI life?
I miss the freedom from guilt that I could prevent such pain. I miss Marty’s carefree independence with other kids his age.
14. What do you enjoy most in post-TBI life?
I like that all of us place more value in day-to-day experiences. We also feel a closeness for having survived as a family.
15. What do you like least about TBI?
Marty’s physical deficits – driving, etc.
16. Has anything helped you to accept your survivor’s TBI?
Internet TBI support sources
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
We have been a cohesive family. Some marriages dissolve with such stress, but our lives came together.
18. Has your social life been altered or changed and, if so, how?
Vacations were put on hold for a few years. Now our social life is good.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I hope to spend summers in the mountains and winters in Florida. I want to continue to be in a close relationship with Marty and his wife, Fran.
20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?
Don’t give up.
Appreciate the small increments of change.
Find external support, such as on the Internet or from other families.
Know there is something in you that does not exist until you pass through pain and suffering. It is then you understand.
Thank you, Marleen, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.
(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 Caregiver Interview Questionnaire for a copy of the questions and the release form.