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The weeks, months, and years can become a blur. For most of us, dealing with TBI (whether as a patient or as a caregiver) is totally foreign -- we've never experienced anything even remotely like it before. For that reason, there are certain things to remember, that can help along the way:
- Get a notebook -- right now! -- and write down everything. Who said what? Why? What do they want to do? What were those vitals? Is that better or worse? And what do YOU notice? You may be tired or inattentive, as events occur -- but if you write them down, you can try to sort them out and make sense of them later.
- "MD" does not mean "Minor Deity" -- As a group, doctors are very bright and well-educated -- but they are not all always on time and on target. They are people, just like you and me. They get tired. They make mistakes. Do not blindly accept what a doctor says, just because that person is a doctor. Get a "second opinion" -- hey, get a "third opinion", if necessary. Do whatever you need to do, to work towards the greatest possible recovery.
- Insist on explanations -- and in language (and pictures) that you can understand. There's no such thing as a "dumb question". This is likely almost like a foreign language to you -- and you NEED to understand. In fact, unless it's a life-threatening situation, if the doctors can not clearly explain what's being proposed -- the procedures, the benefits, and the risks -- then don't let them do it!
- Question "authority" -- If something does not make sense to you, then keep asking until it's either satisfactorily explained or changed. You don't need to become the "parent from hell", for example, but insist on being satisfied with the final response.
- Be on the "care team" -- Consider yourself an important member of the team of people caring for your loved one. And remember that teammates don't let other players make mistakes, if they can help it!
- Fight bedsores now -- If your loved one is comatose or immobilized, then demand anti-bedsore measures immediately. Any significant bedsore will greatly lengthen the hospital stay AND delay the recovery (by limiting the therapies that can safely be attempted). A little preventive activity up front can help you avoid major issues later.
- "Visiting hours" apply to casual acquaintances -- Your loved one needs you there. You are an incredibly significant part of the care team. If the hours are unreasonably restrictive, then get yourself declared to be an "exception". Be there when your loved one needs you!
- Take care of yourself, too -- You will not be able to continue to help your loved one, if you do not also take care of yourself. Remember to sleep, eat, exercise a bit, and do whatever helps you from a spiritual or meditative standpoint.
- Establish a "Circle of Friends" -- When people ask if they can help, say "yes". And then write down their names and numbers. Find one angel among them who can coordinate the efforts -- meals, errands, research, sitting with your loved one, child care, house cleaning, whatever -- and then turn them loose. Remember, too, that some people are willing, but not able -- and that some are able, but not willing. Cherish those who are both willing AND able!
- Avoid asking "why" -- There are no answers to those questions. Focus instead on "What can we do now?"
- Stay positive and forward-looking -- even if the physician or the social worker says that you are "in denial". Patients need to borrow your expectations for positive outcomes, even when they might not have any of their own yet. Help them reach for the best that they can be, whatever that is.
- Insist that others be positive -- Whenever your loved one can hear them, insist that others NOT speak negatively -- nobody needs to try to heal, while carrying the baggage of someone else's pessimism. Take it out into the hall, if need be -- but allow your loved one to remain in a positive environment and to reach for the future.
- Write your own "Care Plan" -- Don't just wait for others to decide what's important for you and your family. After all, people can't read your mind. As you leave the hospital or other institutional setting, especially, make sure that you keep current goals and plans of action in mind. The simplest way to do this is probably just to jot some notes and review them often. Whether this is done on a PC or on a yellow notepad, this can be one of your most important tools for helping you and anybody else stay focused on "what's important today".
- Mourn the losses and the changes in your loved one, if you must -- but also cherish the new person who is growing and mending, before your very eyes. Love may not "conquer all", but it sure can help along the way.
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