Adjustment & Acceptance
DEAR PAT:
I suffered a brain injury in a cycling accident. Within a month, in between surgeries to treat my injuries, I entered into a depressive episode that has continued to this day. I have been on no less than four anti-depressant drugs in an attempt to keep my depression in check. The "treatment" has worked to the extent that I am able to function well enough at work to remain employed. But in my private moments of reflection, I feel that I "died" in this accident and in my current state I am little more than a zombie, the living dead. No one, especially my doctors, seems to understand my perception of reality. They seem satisfied that (a) I'm still alive, and (b) I can make a living. This is hardly a consolation.
Pat is content to have achieved (a). However, each of us defines for ourselves what makes life fulfilling. Pat does not presume to understand your perception of reality. But perhaps, you can revise your perception a bit. Begin by taking an honest look at your life.
Surviving a cycling accident and the subsequent treatments is an accomplishment. Making a living is an accomplishment. Think about it -- so many perfectly healthy people cannot even say they support themselves. You must make a written inventory of your accomplishments and assets. Pat doesn't care if your greatest asset is your ability to yodel in Swahili. Write it down, and remind yourself of this list on a continuous basis -- every morning if you can. Now if you feel equally compelled to focus on your weaknesses or impairments, go ahead. Then take a look at that list and see how many of those things you can change (i.e., bad habits). Do you really need to keep saving all those back issues of Soap Opera Digest? It is critical to see how many of those things you have no power to change, too. Is having fire-engine red hair really so bad? So what if your name is Eunice.
Taking a look at yourself is a first step; looking outside yourself is a good second step. When you spend time pursuing interests and pleasures, you gain happiness. Gravitate toward pleasing things (book stores with coffee shops, baseball games) and stay away from depressing, negative things (insurance seminars, postal workers). Find ways to give to others in any way you can. This is an under-rated source of pleasure.
You have tried different medications and different doctors, but maybe you haven't found the right medicines or the right doctors. You must continue to look. Ask people you know, professionals familiar with brain injury, and referral organizations like the Brain Injury Association for information on experienced doctors. The best option is medication, monitored by a psychiatrist experienced in brain injury, combined with consistent, goal-oriented therapy with a good counselor. You cannot take medications and expect your body to respond unless your life circumstances are satisfactory to you. Counseling can help you get your mind, body, and spirit in order so that you can pursue things you enjoy.
Remember: You alone have the power to define and to achieve fulfillment in your life. You can do it.
DEAR PAT:
I was a teacher for many, many years when I was beaten unconscious by one of my students. I am now learning to accept my brain injury. My husband walked out and has a new girlfriend. My school is trying to make me retire early, but I cannot afford that. I have lost my creativity as well as my spelling ability. Everything seems so pointless. I do not know who I am; will I ever?
Who You Are: a human being with innate value who is deserving of compassion and kindness. There are others who have experienced what you have. They want to help you. Consider contacting the Florida Brain Injury Association and attending a support group for people who have sustained brain injuries. Telephone the Florida Brain Injury Association in Pompano Beach at 954-786-2400 or 800-992-3442 . And send your ex-husband a box of chocolate-covered grasshopper heads from Pat.
DEAR PAT:
I am the caregiver of my 48-year-old wife, who survived a traumatic brain injury (TBI) in an auto accident 2.5 years ago. Although she underwent a CT scan which showed no damage, my wife has a "mild" brain injury. While she has been able to hide her deficits from most people, she has expressed concerns about her cognitive and physical functioning to me. I have observed many problems in her, such as personality change and difficulty understanding conversation. However, I have not been able to convince her to pursue further treatment. My wife doesn't want to accept that she is different since the accident. She has put up an emotional/prideful wall. We are dealing with a highly educated person, a dedicated mother, friend and wife. As the spouse of someone with TBI and a parent, I am almost at the end of my capacity to cope. Please offer suggestions or someone I may speak with that has experienced such difficulties dealing with the mild TBI survivor who cannot move beyond the "public denial" to get the help needed.
While survivors of trauma face overwhelming challenges in the aftermath, "significant others" face significant challenges of a different sort. As a spouse-turned-caregiver, you have experienced major changes in your relationship with your wife and taken on much more responsibility in the family than previously. You and your wife both need support; however, it may be time to rely on resources beyond each other. If your wife is having difficulty coping with her impairments, help her to find a neuropsychologist for evaluation and treatment, as well as a counselor skilled in helping people cope with trauma and disability. She may need to talk with the counselor about her feelings, the change in her self-image, the frustration in trying to resume a normal life, before she is willing to see a neuropsychologist for further treatment suggestions. If you are at the end of your rope, specifically identify those responsibilities that someone else can help with. For example, can a neighbor take care of the kids for a night every other week or so, giving you some down time? Can you pay someone to clean the house once a week or so? More important than such practicalities is your emotional condition. While your wife may benefit by talking with an understanding counselor, you may benefit by the same. By seeing a counselor regularly, you can talk about your true feelings, you can vent the frustrations and exhaustions involved in supporting someone with TBI. Talking about these somewhat uncomfortable feelings is better than keeping them inside where they manifest in frustration and hostility. Another option to consider is attending a support group for caregivers or family members of people with TBI. It can be very helpful and validating. Inquire at your local hospital or contact your state Brain Injury Association for more information on counselors and support groups. You and your wife need each other, but you cannot be all things to each other. Give love . . . but get outside help, too.
DEAR PAT:
I am writing regarding a friend with a brain injury. Do you have any recommendations for a person who refuses to seek professional help to deal with his behavior? He thinks it is going to get better, but it is only getting worse.
The best thing you can do is to continue to provide your friend with feedback about his behavior. If he does or says things that make you uncomfortable or embarrassed, let him know. Encourage other friends or his family to provide feedback as well. Be sure to balance criticism with positive feedback. Remember, if the behavior is due to a brain injury, he may not always be in control of his behavior. Some people aren’t aware of the impact of their behavior on others. Don’t give up. Have faith that things can always change for the better.
DEAR PAT:
I read your response to my brother Rusty. He’s in Tierr hospital and is doing O.L. It’s a really great hospital. I think they will help him with a lot with different things. They’re giving him botox shots to help the spasticity in his body it seems to be helping already with his eating. Do you know anything about the botox shots that may help him? He tells us that he feels lonely and lost and that he has lost at life. We asked the doctors to give him Prozac to help with the depression. Mostly he wants and tries to be the way he was. This is a terrible thing to be alive when you can’t function normally. He’s just a shell of what he once was. Its so hard to look at a relative day in day out for weeks and months hoping they come back to have some kind of normal life. Sometimes you wonder why they’ve even lived through this. We’re thankful for his life because some part of him is better than nothing at all, but I know that my brother would not want to stay like he is forever. But I guess there’s no way to tell who’s going to make it. No one should have to experience these things. The saddest part of this whole thing is that people won’t know what kind of person he was or what he had accomplished before this happened.
DEAR PAT:
My friend had an accident when he was 19. He was hit by a truck and his head was split open. He was pronounced legally dead but was brought back. They put his brain back in his head and sewed him up. They did some tests later on and informed him he only had about 6 years to live because his brain is deteriorating. Well, his 6 years are almost up. He never did any research or anything to find out about this so he doesn't really know if he can be helped. I'm sorry I don't have more info for you to go on. Do you think there is anything medical science can do? Can you tell me more about this condition? And if there is no hope please tell me what is going to happen so I can best be there for him. He just told me this so there's not much time left. Please help.
Pat really can’t tell too much about your friend’s situation from what you wrote. If your friend hasn’t kept up with follow-up medical exams, that is clearly your first step. Without knowing anything specific about your friend’s condition or what may have been causing "deterioration," I really can’t speculate on whether there is anything that can be done. The best thing you can do as his friend is to be sure he is seen by the appropriate doctors, educate yourself about his condition so you can advocate for his treatment, and continue to be the good friend you are. If you can find out any more information about what is causing deterioration, let me know and I will try to give you a more helpful response.
DEAR PAT:
I think what you’re doing here is a wonderful thing. I'm 16 years old and my boyfriend was in a car accident a week ago and in a coma for three days. He has now come out of ICU and he can have visitors. I love to go see him, because he is always so happy to see me. He had some major brain trauma, and is acting like he is 6. I'm not mad at him at all or anything of the sort. I've just become very impatient with this whole waiting process. I've never led onto him that I'm impatient but I can't eat, I can't sleep, and my mind is some where else at work. I would never think about moving on with him in this condition. We were close before his injury, almost too close at 16 sometimes. Could you please tell me how long it usually takes some one to recover and if will ever be the same? If not, what are the chances he will never be the same?
If your boyfriend was in a coma for three days, he likely had a pretty serious injury. If he had "major brain trauma" there is a good bet his recovery process is likely to take a considerable amount of time and rehabilitation. As for whether he will ever be "the same" - Most people have lingering effects of a serious brain injury. Those effects can range from permanent serious disability, to personality change, to memory problems, or in some cases only minor difficulties. It may be that your boyfriend will have essentially the same personality and act the same, but have some minor problems with attention or memory. It may be that he is a very different person both as a result of his injury and the psychological and emotional impact of having sustained a very serious injury and a near-death experience. Only time will tell. Your boyfriend’s doctors are probably the best source of information about his prognosis. Don’t be shy about asking questions.
The main thing is improvement in most cases after a serious brain injury will occur over months, not days. Don’t expect him to "be the same" tomorrow, next week, or even next month. Having someone you care about seriously injured is also hard on you. You might experience feelings of wanting to move on with your life, but feel guilty about breaking up with someone with an injury. You might just want things to get back to "normal" even though that might not be possible – at least for a long time. Talk to your family and friends about how you feel. Consider talking to a counselor – your school probably has a counselor or school psychologist you could talk to for free (At least when school starts). Be patient, show your care and support, and ask his doctors about his condition and prognosis.
Botox is a substance produced by a bacteria that blocks the messages between the nerve and the muscle. Interestingly, it’s from a bacteria that in large quantities causes food poisoning! However, this substance allows over-active muscles to relax and return to a more normal state. You mention that your brother is just a "shell" of what he once was – but it sounds like he’s able to communicate and still has his same basic personality. Your brother may have limitations to what he can do, but he sounds like he’s got the kind of love and support from his family that people need to survive this type of tragedy and still live a meaningful life. I’m glad you’re happier with his treatment now, and I’ll be hoping your brother continues to make good progress.
DEAR PAT:
I was very impressed with this site. I found it helpful and informative as well as emotional. Thanks a lot. Here is my question: My sister suffered a TBI almost a year ago. She has had a great recovery, so far. She is now back to work and functioning quite well. Now she is having a problem admitting that the TBI has had that much of an effect on her life. She is in denial, she is a much different person because of the injury but won't admit it. It has been really hard all of the family. I have suggested therapy but she doesn't see that there is a problem. I have come to terms with the fact that I can't have my sister "back" the way she once was but I want to establish a new relationship her but I don't know how. If you can help – thanks so much. If not -thanks for listening.
Thank you for your kind comments. Pat just loves compliments. Onto your question! After a brain injury, people often seem "different" to family and friends. This can be due both to effects of the injury on personality and behavior as well as the emotional impact of surviving a traumatic event. It sounds like in many ways your sister has been a remarkable success story if she is back at work and functioning well. Because I’m not sure what the "differences" are, it’s hard to offer any concrete advice. One thing I can tell you is that many survivors of brain injury often become tired of having people tell them they are "different" (even if they are different). If your sister is functioning well, it may be that you and your family need to consider if there are ways you can accept her differences in a positive way. For example, if "differences" mean a different likes and dislikes, different attitudes, or different ways of doing things, it may just take time to "get used to" your "new" sister. On the other hand, if "differences" include irritable mood, low frustration tolerance, or angry and aggressive behavior, you can certainly talk to your sister about this and encourage her to seek counseling (or even consider family counseling with your sister). However, you must remember that she is entitled to make decisions about her life – including decisions about whether to seek help or not. The only exception to this would be if she is danger to herself or others (then you can ask a judge to intervene). If her behavior makes it uncomfortable for you or other family members to be around her, you may have to think about limiting your interactions to only include those that are brief and pleasant.
Somehow, I’ll bet a sister as concerned and devoted as you will find a way to work things out!
DEAR PAT:
My husband had a traumatic brain injury in 1996. He has responded very well to therapy. He walks with a walker, speech is somewhat impaired, however, we can understand him. He is still incontinent and gets very frustrated about this. Is there something that we can try to help this situation?
Incontinence is a frustrating and embarrassing problem. Your husband should consult his physician to determine the cause of the incontinence (for example, is it due to lack of muscle control, lack of sensation, or some other reason). Your physician may be able to recommend some medications that can help. There are millions of Americans who suffer from incontinence, and many use adult diapers or protective underwear to help with this problem. Try to be supportive and understanding. Ask your husband's doctor to talk with him about this problem. Counseling may help him to deal with his frustration and to understand that incontinence is a very common difficulty affecting millions of Americans.
DEAR PAT:
My 18 year old sister was involved in a serious car accident on December 21, 1999 and sustained serious head injuries. She was not breathing on arrival at hospital and was put on life support for 2 days. Three weeks down the track she still has Post-Traumatic amnesia, but not seriously. She can remember most things long term, although without a lot of emotion as we lost our mother in a car accident in October 99. She is still in rehab now although insists stubbornly all the time that she wants to go home, and has to go back to work. I feel that she used work as a means to cope with mums death but what the family is finding difficult is that before the accident she was a loving, caring person but now she doesn't care how others feel, ignores visitors and constantly tells us that no-one visits. She says that we are just family and have to be there even though we have been with her everyday, with a loss of money and time etc. I love her dearly and am at a loss as to how to find the sister she was. Is there anything I can do apart from going crazy?
Well, please don't go crazy. That won't help anyone. Probably the most important thing to remember is that your sister's brain injury is probably affecting her behavior. Neurophysiological changes after injury can results in symptoms such as difficulty controlling emotions (or showing no emotion), altered perceptions, difficulty with memory, or distorted sense of time. For example, even though you visited yesterday, it may seem like a much longer time to her. In addition, she has had a serious, traumatic event and this can cause a strong emotional reaction. She is likely reacting to her trauma, wondering about her future, and frightened that her life may never again be "normal." Also, she may be grieving now both for your mother and for parts of herself she's afraid are gone. Try to remember not to take the behavior personally, and just remember that this is a normal part of her injury. Also, if she was just injured on December 21, 1999, she has a VERY recent injury. Brain injury recovery is a long-term process, and it is unrealistic to expect her "back to normal" in just a few weeks. Be patient and give it some time.
Pat has one last piece of advice! Don't expect your sister to be grateful for your "lost time and money." Being a member of a family is sometimes about making sacrifices. Just ask yourself if your sister would do the same for you if roles were reversed. From what you describe about her before the injury, it sounds like she would.
DEAR PAT:
My sister (she's in her mid-20's) had a traumatic brain injury during a car accident almost one year ago. She's been home from the hospital for several months and is doing a lot better. She continues to have weakness on the right side of her body and some memory problems, though. Also, her confidence seems low. I wonder if she'll ever get back to being like she was before the accident. How long does it take to get better after a severe brain injury? What can I do to help her? Thanks, Pat!
Bravo and keep up the good work! It sounds like you care a lot about your sister and want the very best for her. Now that she has been home for a while, you have a chance to look toward the future. Help her anticipate new challenges that may surface. Provide support and encouragement when they do. A little "sisterly love" goes a long way.
In response to your question about recovery time, the short answer is, "It depends." Recovery from brain injury--as you are learning first hand--is usually a long-term process. People may recover quite rapidly in the first six months to a year after their injuries. Then, people tend to find the rate of recovery slows down. The good news is that most individuals continue to recover for some time, just at a more gradual pace than before. Others find their physical or cognitive problems seem to linger on indefinitely. Your sister is far from the "indefinite" phase of recovery. Her problems with motor weakness and forgetfulness may continue to improve. It depends on a number of factors including her own individual strengths (supportive family, motivation, young age) or challenges (severity of brain damage, access to rehabilitation resources), whether this will be the case.
Never stop working toward improvement! Recovery depends on what you do to help it along. To make the most of her progress, your sister should keep regular visits with doctors and specialists trained in rehabilitation (e.g., physical and occupational therapists, neuropsychologists, and physiatrists). Talking to other people about her condition may help renew confidence lost after the accident. Rehabilitation counselors and support groups offer a caring environment for guidance and education about surviving brain injury. Strategies to overcome and/or adjust to memory problems can be developed with the help of a rehabilitation psychologist. Many people find talking with others that have survived brain injuries helps them better manage their own adjustment. Go to a support group for family members of survivors, kind sister, and take advantage of the companionship and understanding you too deserve.