A long one tonight
Okay, my part of Shabbat dinner is complete, so I will take some time to provide more details from yesterday’s Lethbridge adventure. As I predicted, getting Gilly ready ad out the door was more doable than I imagined, but it was still quite challenging. Approaching the center I noticed a parking lot on my right and paused for a bit to consider whether or not to park there; there were plenty of spots. I realized that I would have to let him off at the closest point, so I took my chances, passed the lot and turned into the circular driveway at the main entrance. I had Gilly use the walker (which he resisted, as usual, because I wasn’t sure how far we’d need to walk and what the terrain would be like. Having to take all this into consideration opens up a whole new world for me. I’m a bit lost and I’ve never been proficient at map reading.
I walked him to the elevator and then towards reception on the 2nd floor. I wasn’t sure exactly where to go, so I peeked in to ask. The secretary was with another client at the time (doing the same intake process she’d do with us), so I asked where I should have Gilly wait. I was frightened to leave him alone and run to re-park my car, because if his turn comes up, he would be at a loss, or he may get up without the walker and fall (remember this was only 3 hours after the last fall from bed). I tried to quickly explain my dilemma, but she said, “May I speak?” in a condescending tone. I was taken aback, because the woman (who I later discovered was the nurse) who spoke to me on the phone was exceptionally sweet. I stopped in my tracks and waited. She started to tell me that there is a parking lot just to the right of the building (the one I had passed). I didn’t bother to explain that this information was not useful; I was worried about Gilly’s potential movements in my absence.
We were seen by a doctor, a physiotherapist and her student first. The student was very unprofessional. Every time the doctor examined some part of Gilly’s body, her eyes opened wide with shock and she looked at her mentor. I know his condition is poor on a physical level, particularly the right side, but it is unusual to see such an obvious expression as the one she displayed. I hope her mentor recognizes this ‘flaw’ and helps her correct this behaviour. She is a student and still learning, but I found it unnerving. Let’s remember again that this was only 3 ½ hours since the last fall from the bed…I was still shaking.
This team was not very impressed with what they could do to help Gilly. They made it perfectly clear that they have their reservations as to what they could do to help, since he is not someone they expect to actually rehabilitate. The doctor told me that he cannot diagnose the problem with his arm due to the fall. I was never expecting him to do so, so I found this a weird comment. Then he asked what services I’m expecting to get at lethbridge. I reminded him that the O.T. at the Neuro (Robert) was the one who decided to refer us here, and so I had not considered this question before; I assumed his referral came with recommendations. I am not 100% familiar with all of their services, so how could I fully answer the question. I said that speech pathology would be nice and so would both O.T. and physio. They explained that a team would meet and decide what they could offer. They tested Gilly’s cognitive awareness, and I am certain that this determined for them that he is not trainable (which may or may not be so).
The physiotherapist gently suggested that we get a wheelchair to make it easier for me to transport Gilly to appointments. They were very uneasy watching him maneuver around the room and down the hallway with his walker. He was particularly unsteady that morning; it had only been 4 hours since his fall from the bed.
The speech pathologist treated us with a much more positive attitude, and seemed to take a real interest in Gilly and the possibility of figuring if he could be helped. She spent some time with us, and then set up a meeting for a more comprehensive assessment on December 7th. We agreed that she’ll need to be creative with her assessment tools and in coming up with compensatory strategies due to his visual challenges.
Next, we met the social worker and O.T. They were lovely; great listeners and full of concern. They oozed empathy and could not seem to believe how I am able to function considering the multi-faceted role I have in this whole affair. I admitted that the situation is tough, but I try to focus on dealing with Gilly’s day to day needs as they present themselves. I told them about my blog, and how I fid this to be helpful in several wys (thanks again, Joe). The social worker asked for the address and expressed an interst in the process, wondering if it may help other care givers. They asked me the same question as the doctor and physiotherapist; what services am I looking for? My answer remained the same. I was candid in saying that I am not hopeful that they will take Gilly on for physio or O.T., but made a plea anyway, because I could potentially attain both services in the same place, it is tremendously easier to park than it is at the Jewish (once you know the deal) and also closer to home. They promised to express my wishes at the team meeting, but did not offer false hopes. They bid us goodbye after determining that we had seen the whole crew.
It took some time, but we ambled over to the elevator and prepared to embark just as Louise came towards us, asking where we were going. She is the nurse who set up this whole session, responsible for pushing our case ahead due to the apparent urgency. I was unaware that she was a nurse. She helped us make our way back to the room; getting up, walking to and from the elevator and sitting back down is more of a chore than you might imagine. She did a brief examination, took the list of Gilly’s medications I was asked to brig and sent us packing.
I fear the visit was a waste of time except for the not so likely yet still the possibility of speech therapy down the line. The way out was easier than the trip in, because I knew the scene; I left him on a secure chair by the door, dashed over to get the car and carefully led him back into the front seat of the car.
I called Jerry as I drove off to help me get him safely to the emergency room while I park the car, knowing that I cannot park at that entrance even for 5 minutes. There’s something inherently wrong with that picture, now that I think of it!
After the long haul in the hospital, I vacillated between deciding to go to work and taking the day off. I could not rationalize having Elizabeth here while I remain at home (now I know how to cancel her if in similar circumstances again), so I prepared to leave the house upon her arrival. Just as I was preparing to leave, the phone rang. My student called to alert me of a gastro epidemic at the day care. She advised me not to come, and apologized for calling so early. She explained that she is concerned about having me bring gastro home to my husband at this time. I was flabbergasted. How thoughtful. The other two students at the same center called me one after the other with the same basic information. I thanked them profusely and took advantage of some bonus time. I brought my broken 24 year old vacuum cleaner into Mr. Fix-it, picked up more medication, and so on…there’s no end to what I have sitting on the back burner.
Brad called and we discussed many details of the current circumstances. He decided to solve the caregiver problem today, and actually managed to arrange for Laverne to come here every Tuesday from 8 to 5:00. I will pay for the 9th hour, but the CSSS will pick up the rest of the tab. I moved Elizabeth to Monday, Wednesday and Thursday (or Friday depending). So I’m all set, and I have 2 caregivers I trust and actually like. I feel somewhat liberated!
He asked how I am dealing with the situation, and expressed his concern for how well I seem to be holding it together. He warned me of the need for an outlet and offered support if I need it (as he always does). I admitted that if I take the time to release what I’m feeling inside, I will become a basket case. I’m the type that holds strong during a crisis, and falls apart when there’s no more need to be strong. That’s my style. I feed off of the need to address the pragmatics of the situation, and there’s no shortage of need in this arena.
The CSSS O.T. arrived with gizmos and gadgets, but not all fit the bill. The bed is now supported to some extent and the bathroom downstairs is adapted even further. I requested a wheelchair and a hospital bed. She wondered why the team at Lethbridge did not give us a wheelchair. She will attend to this early next week, but ironically has to do this through Lethbridge.
We had what has now become a Schwager hosted potluck Shabbat dinner; our week ended surrounded by loving family. I’m hoping for a quiet night with Gilly remaining on the bed as opposed to sprawled out on the floor. Yaron installed a bar along the wall to help him maintain his balance. He did fall again last night at 3:00 A.M. even though the barricade was put into place. Now I know for certain that there is no way he rolled out; he simply got up and tried to walk. The bars on the bed and along the wall will hopefully prevent this.
Gilly’s arm still hurts, but the swelling has gone down. Balance-wise, he’s not great, but his condition overall remains pretty much the same.
I walked him to the elevator and then towards reception on the 2nd floor. I wasn’t sure exactly where to go, so I peeked in to ask. The secretary was with another client at the time (doing the same intake process she’d do with us), so I asked where I should have Gilly wait. I was frightened to leave him alone and run to re-park my car, because if his turn comes up, he would be at a loss, or he may get up without the walker and fall (remember this was only 3 hours after the last fall from bed). I tried to quickly explain my dilemma, but she said, “May I speak?” in a condescending tone. I was taken aback, because the woman (who I later discovered was the nurse) who spoke to me on the phone was exceptionally sweet. I stopped in my tracks and waited. She started to tell me that there is a parking lot just to the right of the building (the one I had passed). I didn’t bother to explain that this information was not useful; I was worried about Gilly’s potential movements in my absence.
We were seen by a doctor, a physiotherapist and her student first. The student was very unprofessional. Every time the doctor examined some part of Gilly’s body, her eyes opened wide with shock and she looked at her mentor. I know his condition is poor on a physical level, particularly the right side, but it is unusual to see such an obvious expression as the one she displayed. I hope her mentor recognizes this ‘flaw’ and helps her correct this behaviour. She is a student and still learning, but I found it unnerving. Let’s remember again that this was only 3 ½ hours since the last fall from the bed…I was still shaking.
This team was not very impressed with what they could do to help Gilly. They made it perfectly clear that they have their reservations as to what they could do to help, since he is not someone they expect to actually rehabilitate. The doctor told me that he cannot diagnose the problem with his arm due to the fall. I was never expecting him to do so, so I found this a weird comment. Then he asked what services I’m expecting to get at lethbridge. I reminded him that the O.T. at the Neuro (Robert) was the one who decided to refer us here, and so I had not considered this question before; I assumed his referral came with recommendations. I am not 100% familiar with all of their services, so how could I fully answer the question. I said that speech pathology would be nice and so would both O.T. and physio. They explained that a team would meet and decide what they could offer. They tested Gilly’s cognitive awareness, and I am certain that this determined for them that he is not trainable (which may or may not be so).
The physiotherapist gently suggested that we get a wheelchair to make it easier for me to transport Gilly to appointments. They were very uneasy watching him maneuver around the room and down the hallway with his walker. He was particularly unsteady that morning; it had only been 4 hours since his fall from the bed.
The speech pathologist treated us with a much more positive attitude, and seemed to take a real interest in Gilly and the possibility of figuring if he could be helped. She spent some time with us, and then set up a meeting for a more comprehensive assessment on December 7th. We agreed that she’ll need to be creative with her assessment tools and in coming up with compensatory strategies due to his visual challenges.
Next, we met the social worker and O.T. They were lovely; great listeners and full of concern. They oozed empathy and could not seem to believe how I am able to function considering the multi-faceted role I have in this whole affair. I admitted that the situation is tough, but I try to focus on dealing with Gilly’s day to day needs as they present themselves. I told them about my blog, and how I fid this to be helpful in several wys (thanks again, Joe). The social worker asked for the address and expressed an interst in the process, wondering if it may help other care givers. They asked me the same question as the doctor and physiotherapist; what services am I looking for? My answer remained the same. I was candid in saying that I am not hopeful that they will take Gilly on for physio or O.T., but made a plea anyway, because I could potentially attain both services in the same place, it is tremendously easier to park than it is at the Jewish (once you know the deal) and also closer to home. They promised to express my wishes at the team meeting, but did not offer false hopes. They bid us goodbye after determining that we had seen the whole crew.
It took some time, but we ambled over to the elevator and prepared to embark just as Louise came towards us, asking where we were going. She is the nurse who set up this whole session, responsible for pushing our case ahead due to the apparent urgency. I was unaware that she was a nurse. She helped us make our way back to the room; getting up, walking to and from the elevator and sitting back down is more of a chore than you might imagine. She did a brief examination, took the list of Gilly’s medications I was asked to brig and sent us packing.
I fear the visit was a waste of time except for the not so likely yet still the possibility of speech therapy down the line. The way out was easier than the trip in, because I knew the scene; I left him on a secure chair by the door, dashed over to get the car and carefully led him back into the front seat of the car.
I called Jerry as I drove off to help me get him safely to the emergency room while I park the car, knowing that I cannot park at that entrance even for 5 minutes. There’s something inherently wrong with that picture, now that I think of it!
After the long haul in the hospital, I vacillated between deciding to go to work and taking the day off. I could not rationalize having Elizabeth here while I remain at home (now I know how to cancel her if in similar circumstances again), so I prepared to leave the house upon her arrival. Just as I was preparing to leave, the phone rang. My student called to alert me of a gastro epidemic at the day care. She advised me not to come, and apologized for calling so early. She explained that she is concerned about having me bring gastro home to my husband at this time. I was flabbergasted. How thoughtful. The other two students at the same center called me one after the other with the same basic information. I thanked them profusely and took advantage of some bonus time. I brought my broken 24 year old vacuum cleaner into Mr. Fix-it, picked up more medication, and so on…there’s no end to what I have sitting on the back burner.
Brad called and we discussed many details of the current circumstances. He decided to solve the caregiver problem today, and actually managed to arrange for Laverne to come here every Tuesday from 8 to 5:00. I will pay for the 9th hour, but the CSSS will pick up the rest of the tab. I moved Elizabeth to Monday, Wednesday and Thursday (or Friday depending). So I’m all set, and I have 2 caregivers I trust and actually like. I feel somewhat liberated!
He asked how I am dealing with the situation, and expressed his concern for how well I seem to be holding it together. He warned me of the need for an outlet and offered support if I need it (as he always does). I admitted that if I take the time to release what I’m feeling inside, I will become a basket case. I’m the type that holds strong during a crisis, and falls apart when there’s no more need to be strong. That’s my style. I feed off of the need to address the pragmatics of the situation, and there’s no shortage of need in this arena.
The CSSS O.T. arrived with gizmos and gadgets, but not all fit the bill. The bed is now supported to some extent and the bathroom downstairs is adapted even further. I requested a wheelchair and a hospital bed. She wondered why the team at Lethbridge did not give us a wheelchair. She will attend to this early next week, but ironically has to do this through Lethbridge.
We had what has now become a Schwager hosted potluck Shabbat dinner; our week ended surrounded by loving family. I’m hoping for a quiet night with Gilly remaining on the bed as opposed to sprawled out on the floor. Yaron installed a bar along the wall to help him maintain his balance. He did fall again last night at 3:00 A.M. even though the barricade was put into place. Now I know for certain that there is no way he rolled out; he simply got up and tried to walk. The bars on the bed and along the wall will hopefully prevent this.
Gilly’s arm still hurts, but the swelling has gone down. Balance-wise, he’s not great, but his condition overall remains pretty much the same.
posted by Gilly at 11:43 PM
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