Coping with the Stress of an Adult with a Traumatic Brain Injury

Welcome to the TBI-HELP Live Chat

Today's topic is: "Coping with the Stress of an Adult with a Traumatic Brain Injury."

Our Guest is: Mr. Herbert Greenberg, parent of a TBI survivor

[19:01:40] Mod: Good evening! Tonight we are very pleased to have Mr. Herbert Greenberg, parent of a TBI survivor. His topic of discussion tonight is "Coping with the Stress of an Adult with a TBI."
[19:01:55] Mr.Greenberg: Welcome and thank you for having me as a guest speaker this evening.
[19:02:29] Mod: Rail: What do you find most challenging about your adult TBI daughter?
[19:04:00] Mr.Greenberg: Rail: The most difficult problem was the ability to comprehend and understand what a TBI really was. Having a daughter at age 26 with a Ph.D. in Clinical Psychology and trying to comprehend what happened to my daughter.
[19:06:06] Mr.Greenberg: Mary: I was very angry when I found out what happened. I was especially angry at the medical staff at the hospital. The reason being that I had just seen her post op and she was in excellent condition.. I did not know at that time what a TBI meant..
[19:07:07] Mod: Rail: How much good guidance did you receive from professionals handling your daughter?
[19:08:10] Mr.Greenberg: Rail: What do you mean by guidance? While she was in immediate post coma we received no guidance. It was only when she was transferred to the Rusk Institute that my wife and I received guidance and counseling..
[19:08:42] Mod: Marv: When did you come to the realization that your child would not be the same again?
[19:10:11] Mr.Greenberg: Mary: It was very difficult part of that period when she was in Rusk Institute for 2 years. We had no idea at the beginning. It was only after the realization of what TBI is that I slowly began to understand that this was not a short term or quick fix program..
[19:12:18] Mr.Greenberg: Rail: By guidance as part of the program at Rusk Institute we met once a week, parents etc. as they called us ":clients". We would have round table conversations as to our feelings, progress we saw, hopes and disappointments and we wondered what the future held for those in the progtram..
[19:14:45] Mod: Fran: How did you and your family acclimate to your daughters condition... was it very difficult to accept? How did your family cope with the disappointments?
[19:15:31] Mr.Greenberg: Fran: Our family acclimated to the situation very differently. In my case I shut out for a long period of time, my wife and my other two children. I was only obsessed with Kathy. That created a tremendous hardship on my wife and my other two children. There was a lack of communication and my attitude that I knew better than everyone else further alienated myself from my wife and other two children..
[19:17:16] Mod: Marv: What was it like trying to understand what it was going to be like after your daughter's TBI? Did you have any idea what to expect?
[19:18:49] Mr.Greenberg: Marv: I am sorry for the delay in answering your question. It was impossible for anyone to understand what will follow post coma from a TBI patient., for the layman. How can one understand how a person can go into a room and told to bring out any item such as a sweater and within a period of a second forget what they went in for and forget to bring it out. This is just a small example of what I am giving to truly understand TBI. Each one of us will have a indoctrination period. for some it will be shorter and for other longer. To understand what brain damage is..
[19:19:23] Mod: Rail: After 10 years of TBI professional gaining experience- do you feel they can NOW provide better guidance than what you receive?
[19:22:33] Mr.Greenberg: Rail: To answer your question, absolutely. With each program that my daughter went through, we were able to understand in greater dept what they were attempting to accomplish. For example In some of the programs the request of the patient/client seems so trivial that we would feel that it was a waist of time. But, as the program continued, and the techniques that were used reinforced what they were attempting to do we became much more enlightened what the end result what they were hoping would be..
[19:22:46] Mod: Fran: 2 years is a long time.. how did you manage and who helped you? How did you manage to get past the obsession you were experiencing?
[19:24:18] Mr.Greenberg: Joe: You never really accept that 100%. You are constantly especially at the beginning at the little hope of glimmer and looking for the rainbow. It takes quite awhile, a number of years to realize when the individual has peaked. All you can hope for from that period on that they will not regress..
[19:25:09] Mod: Rail: What advice can you give when interacting with professionals?
[19:26:50] Mr.Greenberg: Rail: Communication is the key. You have to ask questions, if you don't understand the answers ask them again until you have at least in your mind, a complete understand what they are trying to convey. It is important that the chemistry, between the professional and the parent or such as, connects..
[19:27:03] Mod: Jow: Has your family been able to now accept a little better your daughter's situation?
[19:28:21] Mr.Greenberg: Joe: It is now 18 years post coma and yes we certainly can accept and understand. But I must admit that there are times when you forget where and how the condition is and you loose if for a brief moment and have to regain it..
[19:28:43] Mod: Joe: Did you find the professional staff sensitive to your needs and situation?
[19:30:44] Mr.Greenberg: Joe: At Rusk Institute they were very sensitive. At the hospital prior to her entrance to Rusk they were not..
[19:30:53] Mod: Rail: How did you balance the needs of other members of your family around the care of your daughter?
[19:33:47] Mr.Greenberg: Rail: At the beginning I did not do such a good job. The first six to eight months I did a very poor job. All of my energies were focused on my daughter and as I said before I forgot that I had a wife and two other children. It was not until we began attending the round table discussions/counseling sessions at Rusk that I listened to the trials and tribulations of what others were going through that I realized that my behavior was totally inappropriate. I did not make a 360 degree turn on the day I discovered my short comings. But slowly the turn around came and I was able to gather my wife and my children together and realize the terrible period I put them through..
[19:34:27] Mod: TJ: How does the rest of the family relate to your daughter.. have the relationships been close?
[19:36:54] Mr.Greenberg: Mod: The relationship between my daughter and her brother is much closer than that of her younger sister. In part not being married and even though he does live in California will stay in touch with the sister much more then her younger sister who is married, working and has two children and is living in the Boston area. He does not make the time and effort..
[19:37:09] Mod: TJ: I have a lot of trouble understanding the tech stuff.. how did you get to learn that and figure out what people were telling you?
[19:38:56] Mr.Greenberg: TJ: Reading played a great role. The supervisors and counselors that we encountered over the years were very helpful in giving us an understanding of what we were going through and what to expect both long and short term. That was a difficult part to accept the reality of that our daughter would never be totally cured..
[19:39:44] Mod: Patricia: Do you worry about who may provide care to your daughter's needs in the event you are not able to?
[19:41:21] Mr.Greenberg: Patricia: that is an ongoing problem that we face each and every day . While my wife and I are both healthy and have the means as my daughter does also, take care of her. However because of her condition we still have not come to any idea as to who will tend to her needs after either one or both of us are no longer able to do it. I do not speak for this in a financial term, what I am referring to is the everyday functions that have to be attended to to help my daughter live as normal a life under the circumstances as she can..
[19:41:32] Mod: How do you think caring for a child with TBI affects the relationship between spouses?
[19:44:25] Mr.Greenberg: Mod: That is a good question! Each spouse has a different personality and a different mode in handling stress. I did not wish to discuss the subject with anyone, whereas my wife was much more vocal. I thought that she was totally wrong. When in fact in retrospect she was right. The lines of communication should never be closed between spouses. Understand each other, the needs, the short comings, the strengths of each other, if you don't there is nothing but cahos..
[19:45:11] Mod: TJ: Looking back on your experiences, what are some of the things you would have liked to have done differently and why?
[19:46:08] Mr.Greenberg: TJ: I feel that I have already answered that question. I would be more opened and communicate more with my family..
[19:46:31] Mod: Patricia: Are there any support services out there to help with this, when and if you need it?
[19:47:20] Mr.Greenberg: Patricia: There are such a multitude of services but you must research to find them..
[19:47:51] Mod: Sometimes TBI survivors are difficult and verbally abusive. What do you recommend?
[19:50:02] Mr.Greenberg: Mod: In our case, many things changes in my daughters physical abilities. One thing that did not change was here personality. In playing the role of a parent, I was the parent and she was the child. Abusiveness was not acceptable. We did however, let her blow off steam. Most of the time she came back to the real world..
[19:50:22] Mod: What do you recommend to avoid "burning out"?
[19:51:41] Mr.Greenberg: Mod: Realize that there is a life besides, in my case my daughter. There is my wife and children. There are things we enjoy doing. Do not deprive yourself of living the most complete life that you possible can. .
[19:52:02] Mod: As parents, there may be times where there is a difference of opinions regarding what type of care should be provided for a child with TBI, how do you deal with these types of situations?
[19:55:10] Mr.Greenberg: Mod: Actually it was trial and error. In our case, we were told that because of our daughters educational background and age, she would be able to accomplish greater level than those people who did not have those two particular characteristics. We were very fortunate that we never ran into that problem. The reason being that the second program that my daughter ran into at Rusk was an experimental program at the time and at the period of time is when we saw the most improvement. So we really were on the same page..
[19:55:31] Mod: Patricia: When your daughter was discharged from all OT and PT therapies, what was it like for you? Did you feel prepared?
[19:57:43] Mr.Greenberg: Patricia: She was never fully discharged from PT and OT. She continued to have it in the home when she was discharged from the facility. This was continued as an outpatient. OT and PT were done outside and speech in the house in the beginning. Now speech is done on the outside and the only thing done in the house is PT. As far as I am concerned you never stop going to therapy when you have a TBI..
[19:57:57] Mod: Do you think parents of an adult with TBI are better prepared to provide care (since they are already accustomed to it) than the spouse of the adult with TBI?
[20:02:21] Mr.Greenberg: Mod: Yes. During our round table counseling sessions it is my opinion that the parents were much better equipped than spouses. For example, spouse would tell us that this individual is not the person I married and will never be the person I married. Therefore, I am thinking of dissolving the union. This not only happened with spouses it happens with individuals who were engaged to each other..
[20:02:36] Mod: I see that our time is almost up. We would like to thank the audience for participating in our chat tonight. And we would like to thank Mr. Greenberg for providing us with excellent answers based on his experience. Good night and stay safe!
[20:03:44] Mr.Greenberg: Good Night and thank you for having me. I hope that maybe someone out there could be helped by some of the experiences we discussed this evening. Be safe!