Caregivers SPEAK OUT! Joel Goldstein,
(father of survivor, Bart Goldstein, and author of “No Stone Unturned”)
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)
New Paltz, New York, 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?
Our son Bart was sixteen when he suffered a severe TBI (traumatic brain injury). He was a passenger in an auto accident.
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 Bart’s caregiver on January 29, 2001, the day of his accident. My wife, Dayle, and I were and remain Bart’s main caregivers. We remain involved in Bart’s life, but he has now progressed to semi-independence. He resides in his own apartment an hour and half away. We visit and break bread with him every Sunday and on holidays. We participate actively with his “team,” made up of a Benefit Coordinator (a certified specialist or a social worker who is an advocate for the survivor, a CIC (Community Integration Counseling) counselor, and an ILS (Independent Life Skills) trainer.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
My wife and I were responsible for our eleven-year-old daughter, Cassidy.
6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?
I was Director of Human Resources at a medium-sized company. I was lucky enough to be able to take whatever time was needed to care for Bart, especially while he was in the acute phase. My wife, Dayle, worked at home as a Reiki Master. She stopped most work to care for Bart.
7. Did you have any help? If so, what kind and for how long?
Friends and family helped look after our daughter while Bart was an inpatient (four months). Close friends and a wider “conspiracy of decency” in our community helped for several years, post-injury. Here is a short YouTube video, “No Stone Unturned: Traumatic Brain Injury and the Conspiracy of Decency,” that addresses that issue:
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
My and my wife’s support began immediately in the hospital.
9. Was your survivor in a coma? If so, what did you do during that time?
Yes. Bart was in a coma for 30 days. Dayle and I were at his bedside.
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?
Bart had all the standard therapies, plus many unconventional ones. Here is an article, “Fighting the “TBI Wars”: New Alternatives for TBI Survivors,”published by Brainline, that addresses this question succinctly:
11. What problems or disabilities of your brain-injury survivor required your care, if any?
Bart’s injury was very severe – 30-day coma, nine-month rehab, and then years at home reintegrating. He struggled with the full gamut of intellectual, physical, and emotional deficits that come with a severe TBI. Gradually, with time and alternative therapies, these struggles have eased very considerably. Today Bart lives semi-independently, in his own place, with a part-time job, and with new fiends. He is moving on with his life.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
Our focus for over a decade was almost entirely Bart-centric. Pastimes were eliminated (e.g., Taekwondo) and volunteer activities were diminished. (I was president of our local branch Y at the time of his accident, but I resigned shortly after.) People we were accustomed to seeing regularly (especially Bart’s friends and their families) dropped away. We were angry about the friends moving on with their lives, but eventually we forgave and moved on too. Life is both better and worse, in different respects.
13. What do you miss the most from pre-brain-injury life?
I miss old hobbies, sports, travel, and activities that have been shelved in order to be more focused on essentials.
14. What do you enjoy most in post-brain-injury life?
My life is more simplified and focused. I have a new sense of mission and compassion. We have founded the BART Foundation (Brain Alternative Rehabilitative Therapies) – a 501(c)(3).
15. What do you like least about brain injury?
I dislike the timeline – Bart’s recovery from his TBI will be a lifelong challenge. Some issues, like perseveration, are terribly stubborn.
16. Has anything helped you to accept your survivor’s brain injury?
I have been helped by the usual suspects: faith, hope, love, humor, music, family, friends, and fun.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
We’re all walking-wounded in some ways – reminiscent of PTSD (post-traumatic stress disorder).
18. Has your social life been altered or changed and, if so, how?
The caregiving life can often be isolating.
19. What are your plans? What do you expect/hope to be doing ten years from now?
We have formed the BART Foundation (Brain Injury Rehabilitative Therapies), a 501(c)(3) educational charity. The mission of The BART Foundation is to promote better outcomes for brain-injury survivors by answering three questions – which alternative therapies are likely to work, where can they be found, and how can they be afforded?
20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?
Our best advice to caregivers is succinctly summarized in this article. “When the Dust Finally Settles: Strategies for the Long-Term Caregiver,” published by Brainline.
To learn more about Joel Goldstein and his son, Bart, read, “No Stone Unturned – A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury.”
(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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