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.
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).
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.