This page is for people going through a similar experience brought on by an Anoxic Brain Injury (ABI) to a loved one. This is a challenging situation and one that is likely to be the hardest job you ever do. Despite the initial horrible-ness of it all, it can also be the source of some of the deepest joys you will ever find in life. Here are a few key pieces of advise followed by advise on how to be an effective patient advocate:
Get Out of the Hospital
General hospitals seem like safe places to be when you are sick but this is definitely a mixed bag, and in general you want to get out of there as soon as possible. For ABI patients the goal of the hospital is to keep the patient alive until they are moved. It is not to help them heal. I’m not saying people don’t go through healing when in the hospital, I’m just saying that healing is not the goal. This manifests itself in the hospital being willing to use drugs in order to keep the patient manageable without concern for their effects on long term recovery. Another way this manifests is that the environment in hospitals is a constant cacophony of bells, buzzers, monitors, nurse/doctor rounds, and other distractions which culminate in what has to be the worst possible environment for a person trying to regain consciousness after an ABI. You want to get your patient out of the hospital and into a rehabilitation hospital where long term recovery and a calm environment is the primary focus.
Hospitals are in fact not a very safe place to be. There are shocking statistics about how many patients die each year from illnesses contracted in the hospital unrelated to their condition on entry. I witnessed this first hand when my daughter nearly died from dehydration. She was given a normal supply of water each day (1500ml) for a person at rest. This was recommended by a nutritionist who visited her once every two days. In between those visits my daughter had a prolonged session of “storming” that was the equivalent of running a couple of marathons, causing excessive sweating, with no additional water. Her blood pressure and pulse dropped to zero, and she was rushed back into ICU very close to death for a condition that could have totally been prevented with better water monitoring. I supply this antidote in detail to illustrate how hospitals are in fact dangerous places for your loved one to be.
Doctors and ABI
The doctoring we got was not helpful in terms of the brain injury. The doctors were primarily concerned with her physical health and what medicines they could apply. This amounted to drugs to make her sleep, drugs to make her so high that she would stop storming, and vitamins to get her blood levels back to normal.
Of those treatments, the drugs to make her sleep did not work. The drugs to make her high seemed to delay her return to consciousness, and according to papers I found, could have had a detrimental effect on her long term recovery. And the vitamins (mostly Magnesium tablets) just served to make her nauseous. The doctors also required blood draws every day which I think had a detrimental effect on her since her body weight was so low. Basically the doctors just want to keep her alive and beyond that were not helpful.
Removing all of these treatments helped her get back to normal. We treated her sleep issues with normal remedies; go to bed on time, don’t eat a big meal late at night, drink a glass of water before bed, and make sure there are no bells or other distractions to wake her up. We treated her vitamin levels with a healthy diet of fresh fish and vegetables. A healthy diet really seemed to make a difference in her mental sharpness. When she was storming we found that she was most likely suffering a minor irritation, like a hair causing an itch on her face that she was trying, but unable, to scratch. We found that rolling her around and systematically massaging every part of her body, including wiping her down with a damp cloth, helped to eventually calm her down without drugs. This was evidenced when Taylor first became conscious and was unable to move her arms. At that time Taylor asked us to itch her face about every 3-4 minutes. So if you are doing this, start by wiping down their face with a damp cloth to provide an all over face itch remedy.
In general, we kept looking to Doctors to find some kind of magic bullet that would cure her, but never found anything remotely like this. Since the brain’s workings are still so mysterious to medical science, Doctors, though helpful with treating other parts of the body, seem unable to influence patient brain health outcomes.
We found that going to a neuro-optomoligst also did not help. The upshot of the visits was that she was given eye exercises which amounts to eye physical therapy, which leads to my next point.
Therapy is Good
Disciplined Physical, Occupational, and Speech therapies did help. Disciplined meaning that it happened on a regular schedule that was followed. This amounted to asking Taylor to try controlled movements and to assist her in the process. This included moving her limbs, rolling over, pronouncing words correctly, etc. We found that we could do a portion of the therapy with a therapist present and a portion by ourselves. Over time we were doing more by ourselves and less with the therapist. As time went on the therapist went from being the therapy provider to being more like a coach correcting and assisting us in the therapy.
The most effective therapists where ones with the highest professionalism. We found the therapy industry has greatly varying levels of quality. We found a strong correlation to professionalism and quality of the actual therapy. There is also an art to therapy and some therapist know how to design and explain the movements in a way that makes it easier for Taylor to translate the request into action.
We found that paying $40-50/hr for a therapist found on Craig’s list was also helpful after interviewing and trying out different applicants. That said, the best therapists were the ones at the best Recovery Hospitals such as Craig Hospital in Denver Colorado and Rancho Los Amigos in LA.
Therapy is incremental and takes time. When you are with the patient every day it is hard to see the improvements but every exercise helps, and over time these exercises add up. If you spend a little time away from the patient it can become apparent as you will really be able to see the difference when you return.
As the therapy progressed we encountered a discovery which is the next point.
Understanding Brain Reset
A portion of Taylor’s physical and mental skills seemed to have “reset to zero” and her task is to relearn these skills from scratch. This may sound obvious, but it was a real revelation to help make sense of the process we are going through. In Taylor’s case, I describe her loss as losing “everything you can’t easily write down” (technical note: this may be due to damage in the Basil Ganglia region of her brain). This includes how we move and control our bodies, but most importantly, it also includes a lot of processes that are not physical. These non-physical tasks include: Time management, how to interpret and perform subtle non verbal communication cues, how to speak in a way that clearly makes your point, how to sift through various sources of information to get what you need, how to make new friends, etc.
Our intuitions for injured people is that their physical impairment is not coupled with their mental impairment, but in Taylor’s case it absolutely is. This made it difficult for her to re-associate with her friends. They were expecting to see the person they knew, except in a wheelchair. What they experienced instead is someone with vastly different interpersonal skills. This realization can be the most challenging part of the recovery; however, there is some good news which is the next point.
Remember that your loved one is still the same person
In Taylor’s case she remembers all the knowledge you “could easily write down”. This includes all the scientific and cultural facts she learned over her lifetime. It also includes all the memories she had with friends and family. In addition to these facts, underneath all the lost skills, Taylor is still the same person she has always been. This means that she is still tenacious, has a thirst for learning, is giving to a fault, likes to tell jokes, and has all of the other qualities that made her Taylor. Most importantly this includes her intelligence.
She is every bit as intelligent as she was in terms of her ability to learn. It is harder to see now since she has so much learning to go through, but I see it all the time in her ability to improve. It is like a runner who breaks a leg. The leg needs time to heal, but the athletic spirit is still there dwelling in the person. This is the case with Taylor. All the qualities that made her the wonderful person I love so much are still there, intact. We just need to be patient and let the process of relearning run it’s course.
Be a Strong Patient Advocate
Being a strong patient advocate for your loved one helps provide a crucial link between care givers and patient which is especially important with an ABI. Normally when a care giver administers a treatment it is explained to the patient, with the patient’s permission, the treatment is applied, and most crucially the patient provides a check on the treatment by providing feedback and/or refusing to continue the treatment. With an ABI this patient feedback is not possible because the patient is typically unconscious and loved ones (patient advocates) are shell shocked. To counter this I recommend pulling yourself together immediately and taking an active role in your patients care.
Here are some methods I recommend to become a strong patient advocate:
Treat each treatment like an experiment For each treatment know:
- What are the details of the treatment?
- What are the expected results of the treatment and when are they expected to occur?
- What to do if the expected results do not happen?
- When will this treatment be removed?
Research and understand each treatment. Although this may seem impossible, know that your task is much easier than learning to be a doctor. You just have one patient and only a handful of treatments to understand. In addition sites like Google and Pub Med are the best tools that have ever existed for doing your own research into each treatment.
When treating an ABI, care givers have treatment protocols that are applied for all patients. These are good from the hospitals standpoint because they simplify the process. Be aware that these protocols may not be right for your patient and it is likely up to you to determine this. When a doctor knows a treatment is 70% effective they behave as if it is 100% effective. It is your job to determine if the treatment is working, to communicate to care givers when it is not, and to refuse it if necessary. In general treatments, usually in the form of medicines, are applied and never removed, even if they are clearly not working. Note: It is not your job to recommend treatment, that is the care giver’s job. It is your job to know when to refuse it.
Understand Care Giver Influences
Care givers are some of the most amazing and wonderful people in the world who get into the business for the best reasons; however, healthcare is big business and care givers have an army of profiteers trying to influence their decisions in ways that are not always good for patient outcomes. For ABIs this manifests with the use of treatments that have dubious benefits, some of which could even cause long term harm. These include over use of cooling therapy and use of strong brain drugs whose affect on long term recovery is unknown at best.
In addition, care givers are looking out for the institution where they work. Nobody thinks when they are 10 years old that they will someday become a nurse or doctor to protect the liability of a big hospital. This said, employees don’t want to get fired, want to get promoted, etc. and in effect end up looking out for the hospital’s liability more than they would like to admit. It is your job to recognize these traits and to mitigate their negative impact on your loved one.
Learn how to Be Happy
As harsh as it sounds, care givers don’t want to, and can’t possibly be able to, feel your pain, so you have to figure out how to be happy. Most care givers will have someone like you in their work environment every day of there working lives. Like everyone they want to go to work and laugh, have fun, and enjoy their work. This is hard to do if they are confronted with loved ones who are a sad emotional wreck. Find a way to smile and make it fun for the staff to treat your loved one and they will respond like anyone else would by giving the best care. The plus side for you is that finding a way to be happy in this tough situation will help you get through it. I have read this over and over and it is true. An emotionally wrecked person is no help to anyone, especially your loved one.
Ask for and review records each day
After leaving the hospital I asked for all of the records and when looking through them found all kinds of interesting notes that would have been helpful had I seen them earlier. If I was going through this again, I would ask for and review the latest records each day.
One more note is that hospitals typically provide “help” to loved ones of patients in the form of counselors or clergy who mean to help the loved ones cope with the situation. Although these people can be helpful, also know that they are there to look after the hospitals best interest first and yours second. They will be making a report about your visits accessing the risks you may pose to the hospital. Although this was not pertinent in my situation, it was clear from reading those reports, long after these visits, that they used what I said to make a case against me if there was ever a conflict. I suggest seeking outside help if you need counseling.