I wish this first line could read “our absence was the result of an impromptu vacation to an all inclusive resort”…alas, it can not. We are on the front line of the “Awakening Phase” (that is my non-clinical label).
This journal has been an invaluable resource of healing for both Corey and me. The greatest benefit has been unconditional love, support and friendship from all of you. The last several days have been so difficult I couldn’t write. It felt as if the blank page was Pandora’s Box. My words were the key. I have been afraid to release my thoughts unaware of where the stream of consciousness would take me. I have been terrified to vocalize the daily events, exposing the turmoil and incapable of finding the strength to repair the implosion. The retreat and silence has tempered my emotions. Deep breathing, meditation, detachment and patience have been my focus. I remind myself to concentrate on GRACE ~ Gently, Releasing, All, Conscious, Expectations. Some days this is easier written than practiced. My mantra ~ “Our day is 24 hours long. I can do anything if it’s only 24 hours long”. Today, among other things, I found the courage to write.
Corey is not sleeping again and is often agitated throughout the day. Her stranger and separation anxiety is inconsolable. During her quiet times, I research everything TBI to better understand what we are experiencing and how we can cope with the daily challenges. We are back to living our daily routine minute by minute.
Our friends and family want to help and understand what we are dealing with. I’ve mentioned the Rancho Scale. A tool used by the clinical world to better understand the stage of cognitive recovery a TBI patient experiences as they progress through their healing process. I have combined the best of the “layman’s” definitions that come from the following resources; Brain Injury Association of America, the Rancho Los Amigo’s National Rehabilitation Center and Health Pages. The following can assist with the definition of the stages we are currently experiencing;
~ As a patient becomes more responsive, the Rancho Scale* is used to measure the patient’s level of awareness based on their behavior and interaction with their environment. It measures the patients cognitive skills, that is their thinking and memory skills.
~ Cognitive skills include:
• being able to pay attention
• being aware of your surroundings
• following through on decisions
• planning, organizing
• awareness of problems, judgment, reasoning, solving problems
~ Memory skills include the ability to remember things both before and after the brain injury. Depending on the severity of your loved one’s brain injury, some or all of these skills will no longer be the same.
~ The Rancho Scale is a common tool used to evaluate and follow the 10 levels someone might progress through during both recovery and rehabilitation. Keep in mind the descriptions in the following table are general and practical, but not “carved in stone.”
Also, there is no way of knowing how fast someone will recover and make progress through the stages or when progress will stop and even seem to reverse. People with severe injuries may go back and forth between several levels. Others progress through all levels. It is important to know that progressing through all levels does not mean they have fully recovered and that they are the same person they were before the injury.
~ Rancho Scale Level IV (Confused and agitated)
Responds, but is confused and frightened, is alert and in a heightened state of activity, and may be aggressive. He/She will overreact to what they see, hear or feel by hitting, biting, cursing, or thrashing around in the bed/chair even after the stimulus is removed. Their mood swings may swing from euphoric to hostile with no apparent relationship to environmental events. May perform motor activities such as sitting, reaching and walking but without any apparent purpose or upon another’s request. They may not understand that you or others are trying to help them and may become very uncooperative, this is because of the confusion. They often are unable and/or willing to cooperate with treatment efforts. They do not understand what they feel or what is happening around them. These actions are a result of the brain injury and are not being done on purpose. Your loved one may have to be restrained so that they don’t hurt themselves. Their short term memory is absent. Their attention span is very short. They may not pay attention or be able to concentrate for more than a few seconds and may have difficulty following directions. They may recognize family/friends some of the time. They may be able to do simple tasks like feeding, talking or dressing them selves with help.
~ Rancho Scale Level V (Confused and inappropriate)
Responds to you; is confused, but is not agitated. They are easily distracted, have poor memory, and can only pay attention for a few minutes. It’s hard for them to start tasks on their own or remember how to do everyday activities such as dressing or bathing; may need step by step directions. They may not know where they are or what happened. They may be confused and have difficulty making sense of things outside themselves such as orientation to persons, date, time, month or year. They may become very restless when tired, overwhelmed or when there are too many people around. Long term memory is stronger than short term memory; severely impaired short term memory with confusion of past and present in reaction to ongoing activity, including their daily routine, is common place. May get stuck on an idea or activity (perseveration) and need help switching to the next part of the activity. They focus on basic needs such as eating, relieving pain, going back to bed, going to the bathroom or going home. Do not have goal directed, problem solving skills or ability to self-monitor behavior. Often demonstrates inappropriate use of objects without external direction. They may be able to perform previously learned tasks when structured and verbal/visual cues are provided. He/She have the ability to respond appropriately to simple commands fairly consistently with external structures or cues. They are able to converse on a social, automatic level for brief periods of time when provided external structure or cues. At this stage the patient is unable to learn new information.
~ Rancho Scale Level VI (Confused and appropriate)
Responds, but is somewhat confused because of memory and thinking problems. Remote memory has more depth and detail than recent memory; i.e. will remember main points from a conversation but forget and confuse the details. They will show inconsistent recall of day, time and where they are (unless there is a severe memory problem). Can do daily activities with help but may have trouble thinking when it’s noisy or the task has many steps; they require “helpful hints.” He/She are able to attend to highly familiar tasks in non-distracting environment for 30 minutes with moderate redirection. He/She is able to use assistive memory aides with maximum assistance. They can follow a schedule with some assistance but becomes confused by changes in the routine. Moderate assist to problem solve barriers to task completion. Supervised for old learning; Maximum assistance for new learning with little or no carry over. They can manage personal care; brush teeth, dressing, eating as well as being aware of when they need to use the bathroom. They often are impulsive, speaking and acting without thinking first but can follow simple directions. He/She is aware of their hospitalization because of an injury, but will not understand all the problems they are having as a result of their injury. They are unaware of impairments, disabilities or safety risks. They often associate their challenges with being in the hospital and think they will be fine as soon as they go home. Confusion leads to denial that they need help from trained professionals.
As the opening paragraph states, we are floating between Stage 4 and Stage 6 every minute within every hour of each day. I will be meeting with the BM team again this week to continue our discussion as to how to manage these phases from home. The statistics are staggering; Nationally 1.7 million TBI patients are diagnosed each year. 10% (170, 000) are severely injured, open their eyes but do not regain functional ability. They often reside in sub-acute facilities. 3% (5100) regain physical and cognitive functional ability resulting in living with some form of independence. Corey is in the 3% category.
Since we have been attending the Neuro-Out Patient program at BMRH, Corey has made tremendous improvements. Along with the physical strides, comes the improved cognitive progress. Of the two, the latter has been the greatest challenge. The awakening is, however, on par with her physical progress. If she weren’t progressing physically, we could argue the decision to continue the OP sessions. It’s evident that the acute level of rehabilitation is critical to further advancement.
Some have stated that these stages are present during the initial hospitalization stay. Corey is approaching her 2 year mark, why the delay? The severity of her injury, coupled with the natural course of healing along with the recent acceleration of physical progress is the catalyst for the cognitive instability. She’s progressing just as she should.
So where does that leave us? Patience; keep repeating the same answers, reassuring Corey she is safe and moving forward. Deep breaths; don’t take her outbursts personally; we are not dealing with a sound mind. Research and Creativity; we are not in this alone, don’t recreate the wheel, what worked for others may or may not work for us but how will we know if we don’t try? Tears; be gentle with ourselves, recovery takes time, wounds heal from the inside out. Celebrate; Corey is among the blessed 3%, every day, each week, there is improvement. Most importantly; pray for continued GRACE! xoxo