Two weeks ago I mentioned working with the Bryn Mawr team on a behavioral plan for Corey as well as increasing her sleeping medication and adding a new medication that we hoped would help temper her reactions as she moves through the Rancho stages. We began the medication change on August 23rd.
Her sleeping varies each night but she has begun to get 4 straight hours at the beginning of her sleep cycle. For the balance of the night, she is still waking with anxiety that I am not with her and/or she does not recognize where she is. The medication seems to help her fall back to sleep a little easier once she is comforted.
The medication for her temperament is beginning to work also. Corey’s volatile reactions still occur but are less frequent and less explosive. Unknowingly, this medication was tested this weekend. We had an overnight nurse that is typically a ‘fill-in’; she’s only been with us two nights the month of August. She missed the notation for the addition of the new medication. Corey did not receive her 6am dose Saturday morning; the result ~ the day was brutal. I couldn’t understand what caused the change in Corey to revert back with increased outbursts. I couldn’t console her for the better part of the day. Something inside told me to check the medication list. Sure enough, her new medication was not signed off for the morning. The good news is we know the medication works when it’s given! She was much more pleasant throughout the evening.
A behavior plan identifies certain behaviors you’d like to alter along with the steps that will be followed by all involved parties to ensure consistency towards an appropriate end result. Each plan is specific for the individual; however, there are certain standard procedures the TBI ward uses for patients that move through the early stages of the Rancho scale. Most patients exhibit these behaviors while they are an inpatient at the acute level of care.
15-20 years ago 70% of the low level TBI patients returned home with their families. There were many more services available at that time to assist families as they worked through theses stages at home. Currently, 30% of low level patients return home with their families and there are very few services available to educate, train and support families with the Rancho scale reactions.
Physically, Corey is making great strides as an out-patient despite her fatigue as she develops increased stamina and strength. Cognitively, she still needs the intense support of the staff at the inpatient level. Continuity of care is critical as we move through the stages and behavioral plan. Unfortunately, families and home care nurses often do not have experience and/or exposure to TBI or the Rancho reactions. As a result, we are having difficulty staffing our case therefore leaving me as the only consistent caregiver. Our plan will be trialed at Bryn Mawr with the understanding that we do not have the same support at home.
Part of the behavior plan is to wean Corey from me to work with other individuals. At the moment her volatile responses are ignited from separation and stranger anxiety. Her confusion is due to severe short term memory loss. Although we are implementing the plan, she does not remember her outbursts seconds after they are silenced.
The plan is not exclusive to Corey. It is written for the caregivers and therapists as well. Our responses directly correlate to Corey’s reactions. The goal is to develop a cohesive link between the two parties.
The greatest difference in Corey over the last year is her ability to communicate. July 2nd, 2011 we discovered she could write. By September/October she was signing. Early January 2012 she began to whisper words and by spring she had a voice behind her breath. Today she is not only speaking in sentences, she is initiating questions and at times responding with profound thoughts at higher levels of analytical thinking and emotional reasoning.
The typical behavior plan would follow this path; When Corey has an outburst, remove her from the task, put her in a “quiet place”, set a timer and explain to her that she can not return to the task until the tantrum is over. The caregiver will leave the room and wait for the tantrum to silence and/or the timer runs out. I disagree with this method for Corey.
Corey has severe short term memory loss and confusion for people, places and time, but I believe she has a greater cognitive understanding with the inability to retrieve the words to express her emotions. At home, we have been working through the tantrums with verbal prompts and communication. The last week we have been trying our communication plan during her PT/OT and ST sessions.
Here is an example of today’s conversation as we began a new walking exercise;
What’s wrong? ‘I don’t know’
Are you frustrated, angry or scared? ‘Scared’
Why? ‘I want to go home’
Why? ‘I don’t want you to leave me here’
Do you know where we are? ‘the hospital, Bryn Mawr’
Do you know who this is? (Natalie) ‘no’
Natalie is a physical therapist. She has known you for the last two years. She is the person that helped teach you to walk again. You are very safe with her and I’m going to work with you and Natalie. I’m not leaving.
Do you understand what we are doing? ‘no’
(we explained the details of the exercise and demonstrated the activity)
(Corey lashed out again) Are you frustrated, angry or scared? ‘frustrated’
Why? “My left leg won’t work” ~ (LIGHT BULB MOMENT)
“No problem…we can help your left leg”!
Corey completed another first…she walked on a treadmill for 5 minutes!
Corey, communication is the bridge to the connections you are rebuilding! You know what you want to do and how you used to do it. The trick is how are you going to do it now? The answer ~ keep talking to us. We will help you find the path that leads you in the direction you are ready to move towards, xoxo