Brain Recovery Support System

Tucson Aftermath: Representative Giffords’ Recovery

It is such good news that Gabrielle Giffords’ condition has been upgraded and that the tube has been removed. It is also wonderful that many people associated with her care have been extremely positive in their remarks.  What we must not lose sight of is the less exciting fact that her recovery will not be the fast-paced story that has entranced and encouraged her well-wishers everywhere.

The public nature of her recovery will provide much-needed information to the millions of people who know little about brain injury.  We will all have to learn to be patient as we see what it means when physicians describe recovery as a marathon rather than a sprint.

What we must remember as she progresses is that the medical resources available to her are extraordinary.  Few families facing this sort of trauma will be able to afford such rehabilitative services. Others might be able to pay for these services but lack access because of where they live. We are so grateful that she is getting wonderful care.  We just wish other survivors had similar opportunities.

Meanwhile, let us be glad for her continued improvement and keep her in our prayers.

Early Days – Taking It All In and Coping

One of the first challenges a caregiver faces is understanding all the medical terminology, connecting this information to the injured loved one,  and thinking through what it all means for the family.  Anxiety over the condition of the patient, lack of sleep, information overload, the stress of having to re-imagine the future – all these make it tough to figure out how to cope with the next few days, let alone the next few years.

Doctors tell you recovery from a TBI is a marathon, not a sprint, but you know you never trained for a marathon, so how will you manage?  One of the first things to do is to start taking care of yourself.  You can’t afford NOT to eat right, sleep enough, and cry when you need to.

You certainly can’t do all this on your own, so when a sensible and intelligent friend or relative asks how she can help, start by enlisting her to help with a list of tasks to assign to volunteers:  Picking up kids from school, arranging a sleepover for a couple of nights, walking the dog or feeding the cat, getting the mail, hauling in the newspapers piling up in the front yard, making sure there are some tv dinners in the freezer. . . .  (lists and suggestions available in our next Early Days blog post).  People really do want to help, but they don’t want to intrude and often don’t know what would be most helpful; giving them a chance to pitch in is both thoughtful and smart.  And getting a few details off your plate will help you concentrate on more important issues and reduce your stress.  Equally significant is that you will have taken the first step in admitting that you are only human and will need some support to get through this experience.

Friends and Family: Chances are the caregiver is not in any shape to be surfing the internet and stumbling on this blog.  You may be the ones who help the caregiver to see the necessity of protecting his/her own physical and mental health. You may need to make concrete suggestions and come up with some practical tasks for volunteers.  The overwhelmed caregiver may initially resist your help, but at this point, the poor sleep-deprived soul is probably not making brilliant decisions, so just wait and try again later. Someone who is overwhelmed may need to be given simple choices: Do you want me to take Fifi home with me for a few days or should I just go over to feed and walk her twice a day? If you are willing to be an organizer of help for the next few weeks, there are lists and suggestions coming soon – see our next Early Days blog post.

Early Days -Helping to Create Peace & Comfort in the Hospital Room

One of the difficulties of some people who are recovering from a TBI face is an increased sensitivity to sound and to light (other sensitivities may also occur – smells, tastes, touch, for example).  The patient may not be able to communicate this sensitivity, but noises and bright lights may be very stressful and quickly deplete the patient’s limited energy supply.

What friends and family can do to help is to bring in a sleeping mask or sunglasses for dealing with bright hospital lights and  sound-reducing headphones or ear plugs to make it possible for the patient to sleep through the bustle of a busy hospital.

A visitor may need to be told that a patient’s failure to respond promptly to conversation is not because of hearing difficulties but because processing incoming speech is slow and difficult and responding is at least that challenging for the patient.  Speaking quietly and slowly, while keeping remarks short and simple is the best way to talk with the patient.  If remarks don’t call for a response, so much the better.