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
Over the past year I have read a number of books and blogs written by survivors and their caregivers. I enjoy hearing about the tenacity, courage, and ingenuity of these folks, and am cheered by the amazing progress the survivors have made over the years. What frustrates me, as a professional interested in aiding this population, is the scarcity of details about the tools that worked in the long process of recovery. Since recovery often takes years, what are caregivers doing after the insurance runs out? What help have they found, what materials have they discovered, what trends have they noticed? I think that professionals may not have all the answers, and that we need to benefit from the experiences of the people in the eye of the storm.
My Stroke of Insight was one of the first “survivor” books that I encountered. Even though the survivor is talking about recovering from stroke, the material was relevant to me since a stroke following a brain injury may complicate recovery; also, the effects of stroke and TBI are often similar. Certainly the author Jill Bolte Taylor (whom I have since seen on YouTube at a TED conference) is a remarkable woman, brilliant, charming, and dedicated to brain research. But it was her mother’s efforts in retraining a very damaged brain that really revved my engine. I wanted to know more! I assumed that I would be able to find out the details easily enough and that there would be plenty of information out there, so I should just keep looking for similar materials. Unfortunately, I am still looking. I have read technical accounts of research and numerous self-help books and books by professionals (for example: Brain Injury Survival Kit by Sullivan, Brain Injury Survivor’s Guide by Jameson, Mindstorms: The Complete Guide for Families Living with TBI, The Mild Traumatic Brain Injury Workbook by Mason) and my frustration continues to grow. I have investigated software company offerings, read other blogs, and talked to professionals working with this population, and I am not finding the answers I am seeking. What long-term efforts are paying off? What techniques and tools are caregivers finding helpful when the professionals are long gone?
I have decided that maybe I am not asking Google the right questions, so I am putting this question out there: Do any of you know of detailed accounts (I am talking about the level of detail that would help other caregivers and professionals improve their efforts) of long-term cognitive retraining by caregivers? Of course, every survivor is different and so every survivor’s path to recovery will be different, but I believe that there is valuable, hard-earned knowledge in the minds of these caregivers, and I am determined to find out what it is and share it with other families and other professionals. Heck, if I have to do it, I will interview these heroes myself and write an e-book, but there is no need to re-invent the wheel, so if such resources are already out there, please help me find them!
Help make a list of people to contact – focus on email or phone numbers for people whom you can text. Help prioritize: who needs to know right away versus who might want to know but doesn’t need to immediately.
People who will need some outside help: children living at home or aging/ill parents for whom the caregiver or patient is responsible in some way.
If children living at home – will they need a place to stay or someone to stay with them overnight? Will they need transportation to school? Will you need to help with arrangements for events they must attend or help to cancel other activities for the time being? Focus on the next few days at this point.
Other people for whom this family is responsible – aging or ill parents, etc. Who is a concern and what is needed in next few days? Is there someone else who could step in for now?
Pets – list names, types, food (how often, where stored, supply), safety issues (friendly or ferocious, escape artists). Is there a neighbor who could feed, walk, let out? is there someone else who does often this when family is out of town? Any other possibilities?
Housekeeping issues – check to be sure
stove is off,
heat or air conditioning set to keep utility bill low,
someone will take out trash in necessary,
doors are locked,
lights are on a timer (or turn on a hall light),
someone will bring in the mail and keep newspapers from piling up in the yard.
Paperwork – help caregiver
set up an easy to carry file box (office supply stores have cardboard ones that work great) or a large notebook for all the paperwork;
go through the most essential papers to see what needs to be done, what the hospital offers in the way of support, what material will help the caregiver to understand the situation;
start a journal to record what happened, what the doctor said, what questions should be addressed to hospital staff, what needs to be done, etc.
Self-care – Caregivers are in emergency mode and unlikely to eat or sleep regularly. Their health may seem to them like the last thing to worry about, but exhausted and ill caregivers are not up to the task at hand.
Hospital cafeterias are infamously boring and may not even offer the best nutrition, but surely they have smoothies, turkey sandwiches, apples, bananas, maybe even a decent salad bar. If the caregiver won’t go, pick up something you are sure he/she would normally eat, and then try to make sure it gets eaten before you leave.
Health bars, milk shakes, and takeout salads from outside the hospital can be smuggled in to caregivers who are sitting in waiting rooms or at the patient’s bedside.
If the caregiver won’t go home to sleep, try to scare up an afghan or blanket (hospitals are kept cold to discourage germs).
Offer to sit with the patient while the caregiver gets outside for a 15 minute walk.