Caregivers SPEAK OUT! . . . . . . Joel Goldstein
Caregivers SPEAK OUT! Joel Goldstein,
(father of survivor, Bart Goldstein, and author of “No Stone Unturned”)
presented by
Donna O’Donnell Figurski
Joel Goldstein – Caregiver of son, Bart & author of “No Stone Unturned”
1. What is your name? (last name optional)
Joel Goldstein
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.
Joel Goldstein – Caregiver for Survivor son, 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?
Joel Goldstein (caregiver) and son, Bart – brain injury survivor
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?
Bart Goldstein – Survivor with Father, Joel Goldstein (author of “No Stone Unturned”)
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.
“No Stone Unturned: A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury,” by Joel Goldstein
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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(Photos compliments of contributor.)
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Memory loss and cognitive deficits are both prevalent for many survivors after brain injury. Memory loss literally leaves many folks feeling a loss of control over their lives. Cognitive deficits can leave one feeling less than whole.
SPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.
As many of us know, all brain injuries are different. When an injury has happened to any part of the brain, there is going to be a change. The part of the brain that was damaged will determine the kind of symptoms that will be experienced. Because the brain is a complex organ in which different areas communicate, some damage may cause unexpected behaviors or emotional changes.
It’s been a long time since my brain injury. My emotions can be extreme or opposite to what they should be. Change is hard, and I don’t like change. Friends left, and family has never accepted my brain injury.
He also says his memory is damaged, and he can’t remember a lot of things.
right meds before another migraine comes on. (He usually experiences over twenty migraines a month.)
In a nutshell, Jason said, “Lack of love.”
After his injury, Alan experienced intense anger and confusion. His bizarre behavior and sudden change from calm to fiery led Janet to believe her post-injury husband had two personalities. She likened Alan’s behavior to that of Dr. Jekyll and Mr. Hyde, which she found very frightening. (I’m sure Janet is not alone in her fears. I have heard comments such as these in my brain-injury support-groups too many times to count.)
The caregiver, family, and friends need to understand that the survivor’s outburst may occur because of his or her frustration with the reality of the new life – lacking the ability to do the things he or she once did easily and/or experiencing loss of independence and/or the realization of a futile situation. Also, an outburst might be triggered by uncontrolled pain, depression, or any number of ailments. So, showing compassion or empathy, providing comfort, support, and encouragement will go a long way to helping your survivor.
Get counseling. Counseling for both the survivor and the caregiver (or family member) can be helpful. Visiting a 
I was diagnosed as being moody at nine years old. I still have that diagnosis to this very day: “mood disorder due to brain injury.” I also have anxiety and panic attacks. I still have today most of the same problems I had back then, just in an expanded manner.
I know my parents wondered why I acted out, and they took me to multiple specialists during my youth. I was diagnosed with optic nerve damage, but no other problems resulting from my head injury were identified. Each doctor gave my parents the same answer: “There is no logical explanation as to why she is doing this now when she did not do it before the head injury.
During my teenage years and into my 20s and even 30s, I had depression on and off. It got better after I had a hysterectomy. When my behaviors started to level out a lot, I was able to control myself better and move past other issues by actually learning not to do this or that.
It can happen to anyone, anytime, . . . and anywhere.
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