Stark realities while the sun continues to shine
It was a difficult night for me. Gilly slept deeply, while I lay awake for hours on end. I suppose the situation is taking its toll on my nerves. I couldn’t shake the anxious feeling in my chest. Evening telephone conversations set my thoughts off in a million directions and my mind goes into overdrive. I will try to relax this evening that much earlier, in hopes that I can unwind and catch some desperately needed shut eye.
I spent 2 ½ hours at the CSSS this morning with Cathy and Brad. They are both exceptionally supportive and informative. I have much to think about and take care of over the next couple of days.
It was determined by the three of us that a hospital bed is now necessary for several reasons, most importantly because Gilly cannot sit up in our waterbed on his own, and slumps down even when propped up with many pillows. He needs better support when too weak to get up for a meal (he takes at least one meal a day in bed); it seems that his food is not going down as easily as before, and this is a serious health / safety risk.
It is devastating for me to have to accept this change; he always loved his waterbed (which I would have given up years ago if he would have allowed me to; it feels as if I’m crawling out of a swimming pool every time I have to get up and out). I’m not sure if he’ll notice the difference; time will tell. For now, we will set it up in Yaron’s old room, which is practically empty since he moved downstairs. I wish I had had time to put a fresh coat of paint on the walls, but this is not feasible now.
Cathy suggested that I contact Dr. Lapointe to ask several questions. He is in the best position to advise us on certain matters, many of which are too painful to write about, but must be addressed. They all fall under the umbrella of what he referred to as the rainy days we can expect sometime down the road; better to be prepared than have to scramble under duress.
I am beginning to feel numb; today I felt as if I was floating in the air, watching the proceedings take place in Cathy’s office. I walked through the steps of taking in the information; I wrote it down for the future, but could not fully appreciate the reality.
I broke down several times, which I try never to do. I could not contain myself; I decided to go with the flow of my emotions rather than fight them. Cathy supplied me with further details as to what I might expect over the next while, but offered no set time line; it varies from person to person, she explained however the progression is pretty standard. She made many wise suggestions as to how best to ease the situation for us as a family, and preserve Gilly’s personal comfort.
I was offered 14 hours of care per week (up from 8) because Gilly’s current condition now meets new criteria. I will scale down on Elizabeth’s hours if possible. First I plan to train the new person, which will be easier for me this time since my classes end this week.
Cathy and Brad asked how I’ve managed to remain so strong. I find my strength in love, I told them. Brad acknowledged that he sensed the love we shared from the very first day he met us. I reminded him that he was so moved, he almost gave the case over to another social worker. I’m glad he stuck with us for the long haul. He’s been a pillar of support for all four of us.
I jumped from this life altering meeting to the college; not great planning on my part. I should have cancelled my seminar, but in the end, I believe I was able to conduct myself in a focused manner, all things considered. I’m quite certain that my students appreciated my effort; it was the final group seminar of the semester and as usual, they didn’t want it to end Despite my difficult times this semester, we managed to form a strong working relationship.
I moved from the seminar to an hour of trouble shooting questions as fieldwork coordinator; many students popped in and asked to have a word with me. I managed to keep my head above water and answered surprisingly sensibly.
The final Fieldwork Committee meeting of the semester took place soon after, and again, I was able to remain on task, despite the many detours our conversation took. I find it amazing how I am able to forge ahead and take care of minor details in the face of personal trauma. It is just the way I cope, I guess.
Gilly is sitting beside me in the dining room as I type at breakneck speed, smiling every time I catch his eye to solicit one of his lopsided grins. All I have to do is smile, and he responds. In this way, nothing has changed.
I continue to grapple with the division between hope for rehabilitation and hope for his comfort (no pain, and a peaceful existence) as his overall condition declines. I only wish that the second hope wouldn’t have to represent failing him on the first. I’m still hanging on to what most would consider an ill informed wish that things could turn around one day. I owe it to him to keep on wishing until he sends me a strong message that he wants me to stop for his own good.
I have the sense that he understands the gravity of the situation, but hasn’t given up the fight. I remain his most devoted cheer leader, hesitantly preparing for the possibility of rain.
I spent 2 ½ hours at the CSSS this morning with Cathy and Brad. They are both exceptionally supportive and informative. I have much to think about and take care of over the next couple of days.
It was determined by the three of us that a hospital bed is now necessary for several reasons, most importantly because Gilly cannot sit up in our waterbed on his own, and slumps down even when propped up with many pillows. He needs better support when too weak to get up for a meal (he takes at least one meal a day in bed); it seems that his food is not going down as easily as before, and this is a serious health / safety risk.
It is devastating for me to have to accept this change; he always loved his waterbed (which I would have given up years ago if he would have allowed me to; it feels as if I’m crawling out of a swimming pool every time I have to get up and out). I’m not sure if he’ll notice the difference; time will tell. For now, we will set it up in Yaron’s old room, which is practically empty since he moved downstairs. I wish I had had time to put a fresh coat of paint on the walls, but this is not feasible now.
Cathy suggested that I contact Dr. Lapointe to ask several questions. He is in the best position to advise us on certain matters, many of which are too painful to write about, but must be addressed. They all fall under the umbrella of what he referred to as the rainy days we can expect sometime down the road; better to be prepared than have to scramble under duress.
I am beginning to feel numb; today I felt as if I was floating in the air, watching the proceedings take place in Cathy’s office. I walked through the steps of taking in the information; I wrote it down for the future, but could not fully appreciate the reality.
I broke down several times, which I try never to do. I could not contain myself; I decided to go with the flow of my emotions rather than fight them. Cathy supplied me with further details as to what I might expect over the next while, but offered no set time line; it varies from person to person, she explained however the progression is pretty standard. She made many wise suggestions as to how best to ease the situation for us as a family, and preserve Gilly’s personal comfort.
I was offered 14 hours of care per week (up from 8) because Gilly’s current condition now meets new criteria. I will scale down on Elizabeth’s hours if possible. First I plan to train the new person, which will be easier for me this time since my classes end this week.
Cathy and Brad asked how I’ve managed to remain so strong. I find my strength in love, I told them. Brad acknowledged that he sensed the love we shared from the very first day he met us. I reminded him that he was so moved, he almost gave the case over to another social worker. I’m glad he stuck with us for the long haul. He’s been a pillar of support for all four of us.
I jumped from this life altering meeting to the college; not great planning on my part. I should have cancelled my seminar, but in the end, I believe I was able to conduct myself in a focused manner, all things considered. I’m quite certain that my students appreciated my effort; it was the final group seminar of the semester and as usual, they didn’t want it to end Despite my difficult times this semester, we managed to form a strong working relationship.
I moved from the seminar to an hour of trouble shooting questions as fieldwork coordinator; many students popped in and asked to have a word with me. I managed to keep my head above water and answered surprisingly sensibly.
The final Fieldwork Committee meeting of the semester took place soon after, and again, I was able to remain on task, despite the many detours our conversation took. I find it amazing how I am able to forge ahead and take care of minor details in the face of personal trauma. It is just the way I cope, I guess.
Gilly is sitting beside me in the dining room as I type at breakneck speed, smiling every time I catch his eye to solicit one of his lopsided grins. All I have to do is smile, and he responds. In this way, nothing has changed.
I continue to grapple with the division between hope for rehabilitation and hope for his comfort (no pain, and a peaceful existence) as his overall condition declines. I only wish that the second hope wouldn’t have to represent failing him on the first. I’m still hanging on to what most would consider an ill informed wish that things could turn around one day. I owe it to him to keep on wishing until he sends me a strong message that he wants me to stop for his own good.
I have the sense that he understands the gravity of the situation, but hasn’t given up the fight. I remain his most devoted cheer leader, hesitantly preparing for the possibility of rain.
posted by Gilly at 8:30 PM
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