week 2 at home
As the second week home comes to an end, we’re settling into a comfortable routine and realizing once again, that there aren’t enough hours in the day. Between waking, showering, dressing, grooming, eating, medicating and greeting the daily calendar, there is preparation for morning therapy. Morning therapy comes and goes, then lunch, rest, therapy, therapy, rest, dinner or maybe it’s therapy, lunch, therapy, therapy, dinner, with no rest until bed time.
Although routine is important for Michael’s recovery, the nature of the in-home therapy beast is that there is no way to secure a solid daily routine. We typically don’t get the therapists schedule until the evening before or the morning of, so most times you have no idea what the next day will bring. The day is never the same. Outside of that, our own personal routine is the same. Mike wakes up around the same time every day and until the first therapist arrives, we are pushing and reaching toward recovering his independence.
The fatigue that follows a mental workout is often more tiring than the physical. The physical fatigue from muscle weakness usually improves after a good night’s sleep or with a little rest but it’s different if Mike’s fatigue comes from psychological or mental stresses. An extra workout or increasing physically activity will sometimes help to aleviate the mental and emotional fatigue, but not always. There are times when the traumatic injury to his brain consumes all of Mike’s energy and he battles fatigue the entire day.
Mike’s vitals were always in check while at Mt. Vernon but we can’t say the same since the return home. Each therapist is required to check his blood pressure and heart rate prior to the start of their session so we get a reading a couple if not three times a day. Consistently and with no difference between PT, OT or Speech, Mike’s blood pressure has been 140/90, 138/89, 136/90 with a heart rate up to 120. An increase in psychological stress may be the culprit.
You would think that the home environment would be more comforting and indeed it may be, but Mike’s visit with his primary care doctor on Friday brought new light to the change in his vitals. Mike was in a coma for just about a month and awoke (or was reborn as I like to call it) at Fairfax Hospital. The three very controlled environments at the hospital were set up for healing with a focus on brain injury. Then on 11/21/07 he was taken to Mt. Vernon Rehab Center on the very controlled 5th floor where the environment is specifically designed for brain injury recovery and rehabilitation. On the 4th of January, he gloriously returned home.
Our home is loving, warm, comforting and focused on a positive take on life but sensory stimulation is not controlled and most times, out of control. The telephone rings, someone knocks or rings the doorbell; the dogs bark and whine, people stop by, the morning news squawks on the television, and then add new therapists to the mix. We mean well and Lord knows that I am a constant thorn in the side of the rest of the family. With pleads of (I think they call it nagging) ….”turn down the volume/ speak quietly/calm down/put the dogs outside/there’s too much going on”, they say I over-protect. I say, they’re too hyper. We try.
His doctor asked us to log his blood pressure and heart rate throughout the day for the next two weeks to see if there’s an increase only when the therapist visit. So far and thank God, that’s what we’ve seen.
Speech Therapy - Erin was excited about his progress over the last week as she discovered the pathway to his undivided attention. Simply remove the distractions, including Mom. While not speaking, I try to stay close enough to keep on top of their techniques and to monitor his progress myself but the slightest distraction takes Mike away from the task at hand. For the sake of progress, I now move to another room when they begin the session. As I have said all along, Mike’s journey back to life is a learning experience for all of us.
OT/Cognitive progress - You must be able to master sequencing and problem solving if you want to hold down a job. If you want to be on track to purchase a yacht one day so Mom no longer gets the bowl, the cereal, the milk, the spoon - Mike needs and wants to do it himself. So, last Wednesday when I asked Mike what he wanted for breakfast the answer was cereal. It’s been years since Mike has lived at home but with weekly visits for a home cooked meal, he was no stranger to the house and certainly no stranger to the kitchen.
Armed with renewed motivation, I say ” ok, you’re on your own. I’m here if you need me but only if you really need help”. Mike went straight to the pantry, pulled out the cereal and placed in on the island. He opened the box and tilted the box as if to pour and about mid turn, said “I need a bowl”. He returned to the pantry, no bowls there. Mike knows this kitchen but he began to open every cabinet door within reach. No bowl. He opened the fridge, no bowl. He returned to the island and picked up the box of cereal again. “I need a bowl” he said out loud but to himself. He then looked at me “I need help”. I wait a moment and then answer, “Michael, look at me. You KNOW where the bowls are. Just stop and think before you move again”. With his head and eyes down in disappointment he answers, “I don’t know where they are”. I am standing in front of the cabinet where the bowls are and I repeat “Michael, look at me. You know where the bowls are”. As he looked up, I moved my head just a tad and he knew.
By this time though, confusion, fatigue and disappointment were settling in. He walked to the cabinet to get a bowl but could not open a cabinet door without opening another. Open, close, open, close, open, close. “Mike, say it out loud. What do you want to do”. Mike says, “I want to get the bowl”. “Do you see it?” “yes”, he says. “Then put your hand where your eyes are and grab it”. He was able to get the bowl and then placed it on the island. We went through a very similar lengthy process with the spoon but getting the milk was easy. I was leary about the actual pouring of the cereal and milk but with everything else considered, his hand eye coordination worked well. Time - 9 minutes.
When given the same task this morning, Michael went to the pantry, got the cereal, got the milk, got the bowl and then got a spoon. Ok, he also got a fork but what progress from just a few days ago. Last week Mike was lost in the world he knew so well, and this week he made his own breakfast. Time - 3 minutes.
The next time you have cereal for breakfast, take time to think of each single step that your mind has to process to connect the thought to the eyes, to the arms, to the hands, to the fingers to complete the task. Then think of Michael.
There are many long roads we’ll travel on this journey with Mike. Down each road, we need your love, your support and most of all, your continued prayers for strength and healing. Your comments on the blog (which I still read to him) are his daily reminders that he’s going to be ok and that the strength he gathers from this beautiful circle of friends is not broken. Please keep Michael in your thoughts. Keep Hope Alive.
LIVESTRONG xxoo