Support
It seems that for a condition like Tyler's there is little or no support. He's not been given guidance on what to do, what not to do. The only thing we have is the Occupational Therapist from ICBC (a wonderful lady) who steps by 2-3 times a week for an hour, and takes him for a walk or to the gym, or exercises at home.
We don't know if rest is the thing he needs, or stimulation. We don't know how much he should push things despite the pain, or whether the pain is a warning. We seem to be in this 'crash-and-burn' cycle, where he pushes himself and then crashes for several days. Or he takes it easy, rests a lot, is in bed a lot, feels lousy, bored and lonely and still crashes. I get the impression that lying in bed does not make him feel better. But I see that not lying in bed often hurts his head so much. What to do?
We don't know if there are certain mental exercises he should do. I worry about his right eye, which has difficulty. At first we thought it was physical, and that the eye was unable to focus, because that's how it seems to him. The eye specialist said everything is normal.
We're now starting to think that the difficulty is in the brain. The visual cortex somehow tires out, and the image no longer makes sense to him.
Similarly with conversation. When his brain gets tired, he still hears the sounds, but is unable to make sense of the words. Luckily with conversation, that now rarely happens. But his eye still has a lot of problems. And he's started to tune it out, he says. He uses his left eye only, because the minute he forces his brain to use the right eye, it hurts his brain. How can using an eye hurt your brain? Why does no-one have answers for us? I think of all those little kids forced to warn an eye-patch, to protect the lazy eye. Will his right eye totally stop working unless we force it?
And there is no help for immediate family. The focus of our GP, as it should be, is on Tyler. The GP now recommends visits once a month, mostly to renew medications. The focus of the OT is on Tyler. The focus on the OT from his work insurance, Jack, who occasionally checks in, is on Tyler. That is only a few hours here an there, if you add it all up. Thank you for everyone out there, who's been there for me.
They say a brain injury is one of the most isolating conditions. Since social interaction, which requires multi-tasking, concentration, visual and verbal communication, is tough on the brain, it wears him out. But to not have any social interaction brings him down.
I'm glad to see that slowly, we're able to have visitors, and that the days that this is possible are getting more frequent.
But the hardest things is that we can't plan anything. A good day can very quickly turn into a bad day. We never know what to expect.
While I'm away, these next 2 weeks, please, call him, visit him. Please. Let him know you care.
We don't know if rest is the thing he needs, or stimulation. We don't know how much he should push things despite the pain, or whether the pain is a warning. We seem to be in this 'crash-and-burn' cycle, where he pushes himself and then crashes for several days. Or he takes it easy, rests a lot, is in bed a lot, feels lousy, bored and lonely and still crashes. I get the impression that lying in bed does not make him feel better. But I see that not lying in bed often hurts his head so much. What to do?
We don't know if there are certain mental exercises he should do. I worry about his right eye, which has difficulty. At first we thought it was physical, and that the eye was unable to focus, because that's how it seems to him. The eye specialist said everything is normal.
We're now starting to think that the difficulty is in the brain. The visual cortex somehow tires out, and the image no longer makes sense to him.
Similarly with conversation. When his brain gets tired, he still hears the sounds, but is unable to make sense of the words. Luckily with conversation, that now rarely happens. But his eye still has a lot of problems. And he's started to tune it out, he says. He uses his left eye only, because the minute he forces his brain to use the right eye, it hurts his brain. How can using an eye hurt your brain? Why does no-one have answers for us? I think of all those little kids forced to warn an eye-patch, to protect the lazy eye. Will his right eye totally stop working unless we force it?
And there is no help for immediate family. The focus of our GP, as it should be, is on Tyler. The GP now recommends visits once a month, mostly to renew medications. The focus of the OT is on Tyler. The focus on the OT from his work insurance, Jack, who occasionally checks in, is on Tyler. That is only a few hours here an there, if you add it all up. Thank you for everyone out there, who's been there for me.
They say a brain injury is one of the most isolating conditions. Since social interaction, which requires multi-tasking, concentration, visual and verbal communication, is tough on the brain, it wears him out. But to not have any social interaction brings him down.
I'm glad to see that slowly, we're able to have visitors, and that the days that this is possible are getting more frequent.
But the hardest things is that we can't plan anything. A good day can very quickly turn into a bad day. We never know what to expect.
While I'm away, these next 2 weeks, please, call him, visit him. Please. Let him know you care.
posted by Jet (Anat) at
10:12 a.m.
1 Comments:
Great, the way you are sharing this. For, and this sounds like a cliche: I had no idea. No idea of days spent in bed. On Flickr one only sees the happy moments. I wish you both strength and let Tyler know he is on our minds!
All these Iraq veterans who return with some kind of traumatic brain injury, that should at least lead to more research and hopefully therapies...
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