A penny for your thoughts
Last night was rough on many fronts. Trips to the bathroom during the night are becoming increasingly dangerous. The 5:00 a.m. fall did me in. I managed to get only about 15 minutes sleep during the night, or so it seemed.
I called Brad to say that I need ideas for night time safety. I cannot work all day, care give all evening and be up all night. He came up with some suggestions, and promised to arrange for the OT to come by as soon as possible. He admitted that there is a shortage of OT’s at the moment. He insists that an OT is the right professional to help me out of this mess. I asked if I ought to call Robert who assessed Gilly at the Neuro, since he offered to receive my calls anytime (and I ignorantly wondered why I’d need to call; now I know the answer). He suggested I give it a try.
The secretary informed me that Robert will be away until next week, and that she’d love to have someone else address my queries, but there’s a shortage of OT’s right now. Is there an echo in here?
If I had the time, I’d campaign for more OT’s in our system. They are valuable professionals, but apparently hard to come by.
I received a message late this afternoon from the OT at the CSSS saying she’d come for a visit this Friday. I thanked her profusely for speeding up the process. In the meantime, Gilly is thoroughly exhausted (due I’d guess to the 5 days of Temodal; the fatigue is usually cumulative over the course of the session, so I expect a day or two of excessive fatigue). This means he’s not going anywhere too quickly. I’m prepared for tonight; I have some necessary materials and Yaron promised to tag team when he gets home (it’s hockey night in Ahunsic).
I’m learning the importance of having a trained care giver. The woman who cleans my house on Tuesdays (Manuela) is not trained in this regard, and I have come to the conclusion that it is not safe to leave Gilly with her. She cares and is willing to help, but she’s terrified (I understand how she feels; it’s scary, especially when you know the person and what he was once like, as Manuela does). I will have to work out a different scenario for Tuesdays from 9:00 to 5:00, rather than maintain the tag team I set up. Veronica is not nearly as terrific as Margaret, but she knows what she’s doing. I continue to wonder how Elizabeth will fare. I have yet to line up the team players properly, but I’m moving in the right direction. I wish I had someone to stay awake all night and watch over Gilly, but this is overkill. I feel that such a situation would impinge upon my privacy.
Thanks to John, Duds and Yam, the shower bars are installed and make a big difference to bathing safety.
I hope with whatever reserved energy I have left, that Gilly pulls out of this slump somehow. Life is changing for us way too rapidly; I’ve hardly time to catch my breath before a new development occurs. We’re due for a string of uneventful days ahead. We must believe that this is possible. We were sitting downstairs together watching Friends about an hour ago. I rarely sit down in the basement, but I feel safer when I’m close by, so I decided to try to relax by napping to a show I like (I can never fall asleep to one I don't like, for some strange reason). Usually Gilly watches Star Trek or carpentry shows…we do not have the same taste in T.V. shows, and never did, but he said I could change the channel. I was drifting off to sleep when I heard him laugh out loud. This to me is a good sign. There’s more than meets the eye (or ear), I’m sure. I wish he could be given back the gift of gab so he could tell us what’s on his mind…
I called Brad to say that I need ideas for night time safety. I cannot work all day, care give all evening and be up all night. He came up with some suggestions, and promised to arrange for the OT to come by as soon as possible. He admitted that there is a shortage of OT’s at the moment. He insists that an OT is the right professional to help me out of this mess. I asked if I ought to call Robert who assessed Gilly at the Neuro, since he offered to receive my calls anytime (and I ignorantly wondered why I’d need to call; now I know the answer). He suggested I give it a try.
The secretary informed me that Robert will be away until next week, and that she’d love to have someone else address my queries, but there’s a shortage of OT’s right now. Is there an echo in here?
If I had the time, I’d campaign for more OT’s in our system. They are valuable professionals, but apparently hard to come by.
I received a message late this afternoon from the OT at the CSSS saying she’d come for a visit this Friday. I thanked her profusely for speeding up the process. In the meantime, Gilly is thoroughly exhausted (due I’d guess to the 5 days of Temodal; the fatigue is usually cumulative over the course of the session, so I expect a day or two of excessive fatigue). This means he’s not going anywhere too quickly. I’m prepared for tonight; I have some necessary materials and Yaron promised to tag team when he gets home (it’s hockey night in Ahunsic).
I’m learning the importance of having a trained care giver. The woman who cleans my house on Tuesdays (Manuela) is not trained in this regard, and I have come to the conclusion that it is not safe to leave Gilly with her. She cares and is willing to help, but she’s terrified (I understand how she feels; it’s scary, especially when you know the person and what he was once like, as Manuela does). I will have to work out a different scenario for Tuesdays from 9:00 to 5:00, rather than maintain the tag team I set up. Veronica is not nearly as terrific as Margaret, but she knows what she’s doing. I continue to wonder how Elizabeth will fare. I have yet to line up the team players properly, but I’m moving in the right direction. I wish I had someone to stay awake all night and watch over Gilly, but this is overkill. I feel that such a situation would impinge upon my privacy.
Thanks to John, Duds and Yam, the shower bars are installed and make a big difference to bathing safety.
I hope with whatever reserved energy I have left, that Gilly pulls out of this slump somehow. Life is changing for us way too rapidly; I’ve hardly time to catch my breath before a new development occurs. We’re due for a string of uneventful days ahead. We must believe that this is possible. We were sitting downstairs together watching Friends about an hour ago. I rarely sit down in the basement, but I feel safer when I’m close by, so I decided to try to relax by napping to a show I like (I can never fall asleep to one I don't like, for some strange reason). Usually Gilly watches Star Trek or carpentry shows…we do not have the same taste in T.V. shows, and never did, but he said I could change the channel. I was drifting off to sleep when I heard him laugh out loud. This to me is a good sign. There’s more than meets the eye (or ear), I’m sure. I wish he could be given back the gift of gab so he could tell us what’s on his mind…
posted by Gilly at 7:29 PM
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