Peaks and valleys
Chrisitna’s call awakened me after nine this morning. I desperately need days where I do not have to be out of bed by 6:30. Gilly sleeps more soundly n the morning than he does at night. Chrisitina, the nutritionist from the CNR clinic, wanted to be sure that I received her message (I hadn’t had a chance to listen to it, actually). She felt it important to mention that if Gilly coughs while drinking liquids I should purchase a thickening agent to help him swallow. She gave me the name and told me where to find it.
Her dedication and perseverance is highly commendable. I now plan to take careful note of exactly what makes him cough and follow her advice accordingly. He did have a coughing spell last night, but not while eating. It is crucial to remain on top of this, because I have been warned repeatedly of the danger of having food go down the wrong channel. We’ll know more after the swallowing test next week, but she wanted to advise me in case I need to take action beforehand. I appreciate her concern for Gilly’s safety and well being. All professionals on the CNR team continue to amaze me with their genuine concern for Gilly, evidenced by their thorough follow up.
I accomplished more than usual for a day at home. I had a chance to request that the CLSC pick up the heavy wheel chair, because I do not plan to use it any longer. The O.T. understood my complaint and was shocked to discover that there were no foot rests. She agreed that I should seek out an alternative (and I have a couple of options in my back pocket) because the one from Lethbridge will take 2 to 3 months to receive. Moments after we hung up she called me back to announce that a transport wheel chair was located and will replace the one I have now. I was thrilled to hear the news, and relieved to know that this woman is fighting for my cause.
The day passed relatively calmly. We managed to get out for a walk (Gilly on his own two feet). It was a crisp and sunny autumn afternoon; just my kind of weather. The air did us both good. Tamara came by to hang out with her dad and then capably put Shabbat dinner together while Yaron chilled (they say I’m not allowed to use this word, but I’m feeling kin of spunky tonight) with Gilly. This allowed me to attend to school work; it feels good to be productive. I feel awful when I have to turn to my work with Gilly just sitting there all alone with nothing to do. Today he had company of the highest order, and so I worked guilt free.
We had a smaller gathering than usual, but the room was ablaze with conversation. I miss the chatter when the two of us sup alone; all I hear is my own voice.
Fred stayed late and some truth was revealed; he witnesses big changes in Gilly from week to week. This comment made it all too clear that, as I’ve suspected for awhile, I have lost perspective. I’m too close to the situation, so my judgment is off. I was under the impression that he is pretty much in the same state now as he was last week, but obviously, gradual changes are more apparent when visits are a week apart. It’s frightening; professionals rely on my subjective reports to collect a fair bit of their information. I have a responsibility to paint a realistic picture. I admit that neurologically, there are peaks and valleys as the day transpires. It’s difficult to comment on how he’s doing in a given day on average. Tonight, when he rose from the couch, Fred and I witnessed a rather deep valley. I am still awake because I am afraid he will attempt to get out of bed. I want to head him off at the path; he seems much too weak to walk without falling tonight, even aided. I hope it is a temporary lapse, and that he will regain some strength by morning.
Gilly’s very special cousin is in town this weekend. I pray that Barb’s visit tomorrow will be just the medicine he needs. If all is well, I will accept her offer to stay with Gilly while I grade some papers at the best library in town; Starbuck’s. I plan to cash in my gift card for a nonfat chai latte; I can taste it already. Thanks ECE gang this one’s on you. If I do have the opportunity to get some respite, I too will gain some strength.
Her dedication and perseverance is highly commendable. I now plan to take careful note of exactly what makes him cough and follow her advice accordingly. He did have a coughing spell last night, but not while eating. It is crucial to remain on top of this, because I have been warned repeatedly of the danger of having food go down the wrong channel. We’ll know more after the swallowing test next week, but she wanted to advise me in case I need to take action beforehand. I appreciate her concern for Gilly’s safety and well being. All professionals on the CNR team continue to amaze me with their genuine concern for Gilly, evidenced by their thorough follow up.
I accomplished more than usual for a day at home. I had a chance to request that the CLSC pick up the heavy wheel chair, because I do not plan to use it any longer. The O.T. understood my complaint and was shocked to discover that there were no foot rests. She agreed that I should seek out an alternative (and I have a couple of options in my back pocket) because the one from Lethbridge will take 2 to 3 months to receive. Moments after we hung up she called me back to announce that a transport wheel chair was located and will replace the one I have now. I was thrilled to hear the news, and relieved to know that this woman is fighting for my cause.
The day passed relatively calmly. We managed to get out for a walk (Gilly on his own two feet). It was a crisp and sunny autumn afternoon; just my kind of weather. The air did us both good. Tamara came by to hang out with her dad and then capably put Shabbat dinner together while Yaron chilled (they say I’m not allowed to use this word, but I’m feeling kin of spunky tonight) with Gilly. This allowed me to attend to school work; it feels good to be productive. I feel awful when I have to turn to my work with Gilly just sitting there all alone with nothing to do. Today he had company of the highest order, and so I worked guilt free.
We had a smaller gathering than usual, but the room was ablaze with conversation. I miss the chatter when the two of us sup alone; all I hear is my own voice.
Fred stayed late and some truth was revealed; he witnesses big changes in Gilly from week to week. This comment made it all too clear that, as I’ve suspected for awhile, I have lost perspective. I’m too close to the situation, so my judgment is off. I was under the impression that he is pretty much in the same state now as he was last week, but obviously, gradual changes are more apparent when visits are a week apart. It’s frightening; professionals rely on my subjective reports to collect a fair bit of their information. I have a responsibility to paint a realistic picture. I admit that neurologically, there are peaks and valleys as the day transpires. It’s difficult to comment on how he’s doing in a given day on average. Tonight, when he rose from the couch, Fred and I witnessed a rather deep valley. I am still awake because I am afraid he will attempt to get out of bed. I want to head him off at the path; he seems much too weak to walk without falling tonight, even aided. I hope it is a temporary lapse, and that he will regain some strength by morning.
Gilly’s very special cousin is in town this weekend. I pray that Barb’s visit tomorrow will be just the medicine he needs. If all is well, I will accept her offer to stay with Gilly while I grade some papers at the best library in town; Starbuck’s. I plan to cash in my gift card for a nonfat chai latte; I can taste it already. Thanks ECE gang this one’s on you. If I do have the opportunity to get some respite, I too will gain some strength.
posted by Gilly at 1:17 AM
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