"Remember," Alex tells me, "you put on your own oxygen mask before helping anyone else put theirs on."
Easier said than done.
What exactly does self care, in the face of a loved one's illness, look like? Is it manicures, massages, and facials? Is it simply eating three regular meals and getting adequate sleep? Is it processing feelings with loved ones? I've got the latter stuff covered, but am more than happy to spring for a massage. Seven straight days of sitting in hospital chairs, my shoulders next to my ears from stress, and I could use a little professional help to relieve the tension.
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After the speech therapist came in for evaluation yesterday, and my fears about the extent of Brian's head injury confirmed, I was a basket case. I was overcome with worse-case-scenario fears and imagined him forever impaired. His speech therapist, Heather, was nice and thorough, but I could see in her face reactions to his strange answers. He was able to follow basic one-step directions and answer basic yes/no questions. But he had difficulty with several of the other higher level tasks.
When asked to name as many animals as possible within 60 seconds, he said "polar bear, ancient polar bear, old VW bus, vice." When I instructed him to think of the farm right behind his restuarant, the one where his boss's father keeps a variety of exotic animals, he was able to name the Scottish Highland ox, the lemur, and said, "one, not two hat" when trying to describe the one-humped camel. I admit I felt somewhat pleased that he was using an actual word-finding strategy by describing distinctive features and using gestures to get his point across. I'm sure that is something he will work on in therapy.
When asked to name as many animals as possible within 60 seconds, he said "polar bear, ancient polar bear, old VW bus, vice." When I instructed him to think of the farm right behind his restuarant, the one where his boss's father keeps a variety of exotic animals, he was able to name the Scottish Highland ox, the lemur, and said, "one, not two hat" when trying to describe the one-humped camel. I admit I felt somewhat pleased that he was using an actual word-finding strategy by describing distinctive features and using gestures to get his point across. I'm sure that is something he will work on in therapy.
When instructed to repeat and remember three words, rose, sweater, and hamburger, he was his usual cute self and responded, "I'd eat any of them right now." But when asked to recall the words, he said "seven, sweat, anything." And he wasn't joking.
Heather asked him if he'd noticed any changes in his memory, and he responded, "I'm getting more stupid now that my teeth are glued together." She repeated the question, emphasizing memory. He said, "No. I just feel differently because it's difficulty more than I've ever felt before."
Heather asked him if he'd noticed any changes in his memory, and he responded, "I'm getting more stupid now that my teeth are glued together." She repeated the question, emphasizing memory. He said, "No. I just feel differently because it's difficulty more than I've ever felt before."
He's perseverative, and needs several cues to address the actual topic at hand, such as the date. He's fully aware of the day and month, but gets stuck relating the date to his work schedule, and is unable to correctly answer the year. When told that it's 2011, he nods in understanding.
Heather asked him to count from 1 to 10. Using his fingers to count, he said, "one ten, two ten, three ten, four ten, five ten." He jumbled digit spans when asked to repeat them, and was only able to say the days of the week and the months of the year when the task was modeled for him. Not for a lack of knowing the facts and finding the words, but because he didn't seem to understand what was being asked of him.
He misspelled frog "F-R-O-G-H," and said "E-G-H-A-R-G" when asked to spell grape backwards.
When given a description of airport, he said it was the Rhode Island Hospital. And with elevator, he said it was a hospital. I guess I don't blame him for not being able to think of anything else after being in the same place, imprisoned, for a week.
He answered most yes/no questions accurately, about the sun rising during the day, and corks floating in water. But when asked if pigs fly, he said, "If you like pigs a lot." Not trying for funny.
When given a list of three words, and instructed to name the category, he was 100% accurate. However, he still said strange things. When told car, bus, train, he said, "If it's not a fruit it's nice, but if it's transportation it's not cool." So he's correct, but had an interesting way of relaying the information.
And finally, when looking at the classic "Cookie Thief" picture he said:
"Oh look at me, I spilt some food or water and I'm smelling some cookie jars ... Out of three people I'm the only one getting cookie jars."
His responses and behaviors were textbook frontal lobe damage, but it's his lack of insight and awareness to his deficits I find the most terrifying. As I learned in school, this can be one of the more difficult things to treat. At this point, the speech therapist recommended a neuropsych referral and intensive cognitive-linguisitc therapy 4 to 5 times per week. While this all might not mean a whole lot to anyone not in the medical field, it means too much to me, and I sometimes resent knowing about brain injury and cognitive rehabilitation, wishing for a more ignorance-is-bliss scenario,
**********
When I went back to the hotel last night, I texted Katie to let her know the Baby and I had plans to sleep in. But when I woke up this morning, I didn't feel any better. I still wanted to lay in bed and cry. And I dreaded returning to room 631. I texted Katie again and let her know I was going for a walk, and that I wouldn't be in for awhile unless they needed something.
Fresh air. Some exercise. Respite. Just what the doctor ordered. I wandered out of my hotel, across the Wickenden Street pedestrian bridge and wound my way through the cute shops and neighborhoods surrounding Brown University and Rhode Island School of Design. At first I had to stop every few minutes, take a seat, and just rest. The exhaustion was overwhelming. But with Foster the People on my iPod and a chocolate-peanut butter milkshake in hand, I wandered all across College Hill in Providence.
When I finally returned to my hotel some four hours later, I passed out on the bed and napped while I Love You, Man played on the TV as background noise. I awoke feeling refreshed, and finally made my way to Rhode Island Hospital, a place more familiar than I ever imagined. Brian was feeling like shit, not surprisingly, and he rested while Katie and I knitted, chit-chatted, and avoided talking about anything related to Bri's injury and his cognitive status.
It was nice to put my oxygen mask on first today, but I still wish I had found a magic wand in that cute Wayland Square toy store.
When I went back to the hotel last night, I texted Katie to let her know the Baby and I had plans to sleep in. But when I woke up this morning, I didn't feel any better. I still wanted to lay in bed and cry. And I dreaded returning to room 631. I texted Katie again and let her know I was going for a walk, and that I wouldn't be in for awhile unless they needed something.
Fresh air. Some exercise. Respite. Just what the doctor ordered. I wandered out of my hotel, across the Wickenden Street pedestrian bridge and wound my way through the cute shops and neighborhoods surrounding Brown University and Rhode Island School of Design. At first I had to stop every few minutes, take a seat, and just rest. The exhaustion was overwhelming. But with Foster the People on my iPod and a chocolate-peanut butter milkshake in hand, I wandered all across College Hill in Providence.
When I finally returned to my hotel some four hours later, I passed out on the bed and napped while I Love You, Man played on the TV as background noise. I awoke feeling refreshed, and finally made my way to Rhode Island Hospital, a place more familiar than I ever imagined. Brian was feeling like shit, not surprisingly, and he rested while Katie and I knitted, chit-chatted, and avoided talking about anything related to Bri's injury and his cognitive status.
It was nice to put my oxygen mask on first today, but I still wish I had found a magic wand in that cute Wayland Square toy store.
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