One of the sad consequences of brain injury is isolation. People just don’t understand the situation when the wound is invisible. Slowed or altered social responses and disinhibition (saying or doing whatever pops into your head without considering whether it is politic or tactful) can put off friends and family. Personality changes, some trivial (the friend who inspired my interest in TBI now likes vegetable he used to spurn), others more disconcerting, also can puzzle and turn off people who don’t understand. Veterans are used to teamwork. This sense of connection is one of the facets of military life that spurs re-enlistment among healthy military folk, and one of the things they miss during recovery from injuries. Some survivors are isolated in remote areas, others by the effects of their injuries. In any case, helping them reconnect with peers who actually understand their situation is a smart approach to treatment.
This story supports my belief that working with groups of veterans and helping them connect online is a good idea:
Depression is such a common malady for TBI survivors (and probably their caregivers if anyone ever pursued that issue) that it seems like a good idea to look more closely at this condition and some ways to cope with it now that we are entering “the bleak midwinter” (TS Eliot may think “April is the cruelest month” but I vote for almost any month in winter).
Causes of post-TBI depression are pretty obvious: changed abilities, circumstances, and prospects; concerns about the future in terms of finances, social relationships, independence, and productivity; in some cases, ongoing pain, sleep deprivation, and other physical problems. Winter can make things worse because of SAD (seasonal affective disorder – what happens to some people if they don’t get enough sunlight in the winter), reduced opportunity to enjoy the outdoors because of cold and the fear of falling on icy surfaces (thus making exercise even less appealing), holiday blues from Thanksgiving through New Years with Valentine’s Day fast approaching.
So what can a survivor and family do to short-circuit winter blues? Even if you can’t walk outside, malls, stairs, treadmills, and stationary bikes offer exercise opportunities. You can use weights and do leg lifts in your recliner while you watch tv (I confess that I do). Seek out humor - Readers Digest jokes, comic strips, tv shows that make you laugh. Find music that peps and cheers you up – maybe exercise to it. Don’t compare the current you with the pre-accident- you. Look at how far you have come since the accident, and set reasonable goals for the future. Learn something new. Research shows that effort invigorates. Investigate the exciting ideas of Dr. Martin Seligman who has developed a very sensible and upbeat approach to life with his work on Positive Psychology. http://www.authentichappiness.sas.upenn.edu/Default.aspx
Studies of the experience of family and friends (F&F) who are at the bedside of a patient in Intensive Care suggest that the F&F have a lot to deal with and not always a lot of support. First of all, there is the apparent chaos. Although hospitals are generally organized places, trauma units (e.g., the emergency room) and ICU’s are full of medical, technical, and bureaucratic mysteries. The noise, rapid response, and brusque no-nonsense behaviors in the emergency room are bewildering and frightening for F&F. They are in a situation that is difficult, anxiety-provoking, and unexpected. They are worried about the patient’s survival; they also have fears about what the future might hold for the survivor and themselves. Will the survivor be disabled? What sacrifices will be necessary to provide resources for recovery? What about the family’s financial future? What impact will this have on their roles and relationships in their community? Meanwhile, they need to stay out of the way so the medical staff can care for the patient, even though that means being separated from their loved one and being kept in the dark while the staff is dealing with the immediate crisis.
Once the patient is moved to the ICU, F&F hope to get more complete information, but the staff may not be able to provide a thorough diagnosis and a reliable prognosis. F&F feel an overwhelming need to know how the patient is doing and what the future holds. Unfortunately, there is still a lot medicine doesn’t know about brain injuries, and, of course, every TBI is different, so trustworthy generalizations are not thick on the ground. Loved ones are looking for hope, but medical staff may not be able to tell them much that sounds hopeful. In addition, available information is often couched in highly technical language, and the stressed-out F&F may fail to understand what staff is telling them.
F&F tend to minimize their own concerns and try not to consume the time and energy of staff. They try to cope with their own anxiety and uncertainty, while constantly looking for information about the patient. They may interpret patient and staff actions and draw erroneous conclusions. They don’t want to be a bother or detract from the patient’s care, so they may fail to ask questions that would clear up anxiety-producing misunderstandings. They often feel guilty about their own fears and very real concerns (e.g., trouble sleeping, how to explain the patient’s situation to others, dread of an insecure and uncertain future).
This post is a summary of research findings cited in the following article: Agard, Anne Sophie and Harder, Ingegerd, “Relatives’ experiences in intensive care – Finding a place in a world of uncertainty,” Intensive and Critical Care Nursing (2007).