“Recovery is not so much about regaining what is lost, but loving what remains.” –The Never Ending Journey
In my mind, I thought that once we got into rehab that it would be the road to everything going back to normal. Not to say that I am not completely grateful the gains that were made but it had become clearer to me that things were a bit more permanent then I thought. No matter what stage he was at, I always wanted more. In the coma I just wanted him to wake up and he did. Then I just wanted him to look around and he did, and then I wanted him to let me know he remembered me and he did. It is endless and I could go on and on. He was one of the few patients in the Slow to Recover that was allowed and able to eat and I remember how envious the other family members were. As much as I was happy for this happening, I was also sad for those I came to know and care about while Shawn was in rehab. He spent a total of 4 months there and once he was selected to take part I decided to leave work. By this time I was about 5 months pregnant so I was able to start my maternity leave early. It was so important that I be there for him everyday during his therapies to motivate him as well as learn strategies that I could use with him. There was a lot of downtime in the day so I would work with him on areas like speech and fine motor skills. It was fairly soon after arriving that his Speech Therapist figured that Shawn could communicate if given a letter board. At first it was just the words “yes” and “no” and he would point to which one when asked a question. What an amazing revelation that was to know that I could talk with him this way and he could answer me. From there he graduated to a word board with all letters of the alphabet and numbers and he would spell words. He was still very slow when pointing and would often tire easily before he was done so I kept it to short words and sentences and basically filled in the blanks. I remember the first time we had complete 100% confirmation that his long-term memory was intact was when he was able to spell out our names. My mom even asked him if he planned on marrying me one day he right away spelled about “Y-E-S”. I was so happy because you never know how a person can change and if your love for each will be as strong but ours definitely was and continues to be!!
Another amazing step in his recovery was when they were able to stand him up in a standing frame and he started wanting to take a step. He would take a tiny step with his right leg and the extreme tone in his left leg would just sort of let it sweep forward. We were originally told that movement would come back in his left side but as time went by the rehab team was reporting to us that he was definitely paralyzed in his left side (hemiplegic). To this day he has only regained very slight movements in his left side but we don’t give up hope and continue to work that side just as hard as we did back in rehab. Everyday was pretty much the same when he was doing rehab and there was always a lot of free time and the weekends had no scheduled therapy. The beginning of the day was a group session where all 6 patients and their family members would meet and discuss what day, month and year it was and also asked to describe the weather outside. There were large cards and the therapist would display 2 choices to each patient and they had to decide between the 2 cards. Some patients were unresponsive, some able to point to the right card and others just used blinks or eye glances. Fortunately for us, Shawn was one of the few that were actually able to point to the right answers and in the entire time we were there, there was only 1 patient able to give the correct answer verbally. Everybody in this program was deemed “slow to recover” and that criteria meant that you had to be fairly low scoring on the Rancho Los Amigos Scale. The scale scores as follows:
I. No Response Patient appears to be in a deep sleep and is unresponsive to stimuli.
II. Generalized Response Patient reacts inconsistently and non-purposefully to stimuli in a non-specific manner. Reflexes are limited, and often the same, regardless of stimuli presented.
III. Localized Response Patient responses are specific but inconsistent, and are directly related to the type of stimulus presented, such as turning head toward a sound or focusing on a presented object. He may follow simple commands in an inconsistent and delayed manner.
IV. Confused-Agitated Patient is in a heightened state of activity and severely confused, disoriented and unaware of present events. His behavior is frequently bizarre and inappropriate to his immediate environment. He is unable to perform self-care. If not physically disabled, he may perform automatic motor activities such as sitting, reaching and walking as part of his agitated state, but not necessarily as a purposeful act.
V. Confused-Inappropriate, Non-Agitated Patient appears alert and responds to simple commands. More complex commands, however, produce responses that are non-purposeful and random. The patient may show some agitated behavior it is in response to external stimuli rather than internal confusion. The patient is highly distractible and generally has difficulty in learning new information. He can manage self-care activities with assistance. His memory is impaired and verbalization is often inappropriate.
VI. Confused-Appropriate Patient shows goal-directed behavior, but relies on cuing for direction. He can relearn old skills such as activities of daily living, but memory problems interfere with new learning. He has a beginning awareness of self and others.
VII. Automatic Appropriate Patient goes through daily routine automatically, but is robot like with appropriate behavior and minimal confusion. He has shallow recall of activities, and superficial awareness of, but lack of insight to, his condition. He requires at least minimal supervision because judgment, problem solving, and planning skills are impaired.
VIII. Purposeful Appropriate Patient is alert and oriented, and is able to recall and integrate past and recent events. He can learn new activities and continue in home and living skills, though deficits in stress tolerance, judgment, abstract reasoning, social, emotional and intellectual capacities may persist.
Shawn was actually one of the older patients in the program, as typically most of them were teenagers or young adults. I remember looking at photos of other patients posted around the rooms and it was so upsetting to see who they were before. Most of the patients were victims of motor vehicle accidents but there was one overdose and another was an aneurysm. The length of stay in this particular rehab program is generally 4 months so we did see a few come and go and I often think about some of the families that I got close to and wonder how they are doing. We talked about staying in touch but we never did because as I have learned once you get home life becomes so busy and you barely have time or the freedom to really do social things.
So as I was saying about a typical day in rehab, there was the group session and then we would have a schedule given to us each morning so we knew where we needed to be. Generally Shawn would have OT twice a week, PT 4-5 times a week and Speech twice a week, the rest of the time was filled in with various activities. Sometimes we would have so much free time that we would watch TV together or we would go on a walk. Other times he would have time with the Rehab Therapists and they generally had him cycling on a special bike called a Motomed that exercised not only his legs but also his arms. Once a month there would be recreation activities like an outing or play cards or Wii with the other patients and their families. Weekends were the worst because there was absolutely nothing going on and we would just “hang out” in the hospital and go on a walk, sit outside or just watch TV. It was 2 weeks after he entered the rehab program that I was actually able to bring him home for the first time. We started off slow with just a day trip and then soon after overnight visits and he would come home for the entire weekend. I really think that because I pushed the home visits early on that is what made huge gains in not only his memory but also his motivation to get better.