Here is an excerpt from Robin Gentry McGees book, A Turn for the Worst. Following are ten important things to think about or do as a caregiver. I wish I had thought about a few of these while my brother was first hospitalized!
Take Care of Yourself Physically Its easy to love on adrenaline but caregiver burnout is a very real thing. Ask for help from friends and family. People generally are happy to help but often do not know what to do. Dont be afraid to ask for help when you need it. Get a support system in place early on; it will help immensely.
Take Care of Yourself Emotionally Many times, depending on the nature of the illness or injury, it will change everyones lives forever. This can happen very suddenly. Watch for signs of depression and dont delay in getting professional help when you need it. We often feel guilty doing anything pleasurable for ourselves when we see our loved one suffering. It is important to find a place for these feeling when they arise.
Find an Advocate I am convinced there needs to be a patient advocate for anyone undergoing extensive treatment in a medical institution. Im not talking about an advocate the hospital offers. I recommend an individual who is not afraid to ask tough questions, do the required research and who will not take no for an answer. Make sure that you are completely comfortable with the answers you are being given. If you are not satisfied with the information you are receiving, you may want to dig a little deeper. This is not an easy task and may be very time consuming. It is in everyones best interest to delegate this day to day task to someone you trust until the situation is resolved. This could be a family member, friend, or casual acquaintance who has personally experienced getting caught up in the medical maze and figured out how to navigate the murky waters.
Keep Copious Notes You will need to call employers, insurance carriers, friends, family or even maybe an attorney, etc. Be sure to jot down notes during your calls. As you move through the process, you may forget what you were told, or how you were supposed to follow up with the information you receive.
Journal Daily This will give you something to do as you may possibly face many hours of endless waiting. In general, journaling is one of the most therapeutic things anyone can do. One of the numerous benefits of journaling is that you are actually getting things out of your head, if even momentarily, allowing yourself a space to breathe into. The reprieve may be temporary but it does help. Also, when faced with a situation such as this, it serves as a chronicle of days, times, and events. Under stress, we sometimes move through events in a fog like state, losing all connections with time and space. It is imperative that you record everything that happens during this time.
Request To be Notified of Any Changes in Medication There are always many different specialists involved in any patients care. It is easy for them to overlook an existing medication, which may have a dangerous interaction with the new medicine ordered. In traumatic brain injury in particular, patients are more susceptible to side effects and may react adversely to some pharmacological agents.
Do Your Own Research Many medications have side effects worse than the condition that the drug is supposed to be treating. Research this for yourself on sites such as drugs.com under the professional information. You will find information there that you will generally not receive from doctors or pharmacists. Doctors say they have to weigh the benefits against the risks. If this is not an acceptable answer, and if you are not comfortable with the risks, you do have the right to refuse the risk (see Patients Bill of Rights, pg.35) typically older medications have less side effects than the new designer drugs. Also, ask what medication is medically necessary to achieve the desired outcome. Many times it seems that medication is prescribed simply because it can be. In my experience, patients or their families are never informed of the possible side effects. When questioned, many doctors will also tell you that when the medication was tested before market release, only one to two percent of people in the trials experienced side effects. What they do not tell you is that many of those trials were only done on as few as 70 people. With many of those drugs having potentially deadly side effects, is it even worth the reported 1% risk?
Be Positive Remember, no negative talk. Many people, including a lot of doctors, are under the impression that patients in an unconscious state do not know what is going on around them. Every brain injury is unique and it is unknown how aware the person in a coma is. Some people remember very vividly what was going on around them while they were in a coma. Other people do not. A study in the New England Journal of Medicine shows that scans can detect signs of awareness in patients thought to be closed off from the world. In the study, released Feb. 2010, they asked comatose patients and healthy volunteers to imagine playing tennis while they were being scanned. In both populations, this stimulated activity in the pre-motor cortex, part of the brain that deals with movement.
Act Naturally This is hard to do, but necessary. Read to your loved one-newspapers, favorite books, letters and cards. Tell the patients daily what month, day, and year it is. Tell them about everything positive that has happened in your day and any milestones. I know there is nothing about your world that seems like it will ever be normal again, but by projecting faith instead of fear, both you and your loved one will benefit on some level.
Auditory Stimulation Bring in a CD player and play the patients favorite music. Research has shown positive effects on awake patients undergoing evaluation for brain surgery. It would make sense that auditory stimulation would have the same effects on the cerebral cortex of comatose patients.
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