Rough road
Today was spent gathering information and trying to confirm appointments. It seems that the CSSS can only provide the type of care we’ve been receiving, so I have to look elsewhere for more comprehensive coverage (at least 2 full days a week for now; I think we can wing coverage the rest of the time). I made significant progress in my search for appropriate services, and hope to have something in place by Tuesday. I will also need to make several adaptations to our home to decrease the possibility of Gilly injuring himself.
Getting Gilly up and out of bed this morning took an enormous length of time, but I was not scheduled to go anywhere out of the house for work today, so it was not as frustrating for me.
We arrived late for physio. I stayed for the session. Thi confirmed that Gilly’s balance has worsened, but contends that if he religiously uses the exercise ball at home, he can recoup at least some of what he’s lost. He refuses to cooperate with me, though, when I try to have him sit on the ball at home. I told Thi that he will have to move in with us, since Gilly happily complies with anything Thi asks him to do. I hope to have the person I plan to hire for those two days be shown how to help Gilly do the exercises. Thi suggests I bring the person in for a session, and he will evaluate whether or not this is feasible. Gilly needs to be spotted very vigilantly at this point.
I called Sandra from the O.T. Dept. at the Neuro today to ask what gives. I hadn’t heard back from her as to a confirmed day and time for Gilly’s appointment. We last left it that she would contact me when she receives the referral from Dr. Kavan. Lo and behold, nothing has come forth as yet, although she claims to have left messages requesting that this be attended to. She explained that it’s not legal for an O.T. in her department to see Gilly without a referral; she suggested I call the Neuro Oncology Dept. to get some answers. I hung up and immediately left a message for Denise, the wonderfully kind and helpful coordinator who assisted me during the MRI CD caper. Moments later I received a call from her assuring me that the referral would be sent tomorrow, and that we are to keep Monday’s appointment. I left Sandra a message to that effect, and asked to let me know what time to come in on Monday.
Gilly wasn’t nearly as hungry as usual today, but fortunately I managed to convince him to eat most of what I gave him. He seemed more observant of his surroundings, and his answers, although garbled, seemed on topic. He was very low key (in relative terms of course; Gilly used to be incredibly energetic and enthusiastic). I do not usually spend the day with him after physio. I suppose it wears him out, and this is what I witnessed.
Gilly no longer walks downstairs alone. I forbid it. Instead, he follows along slowly behind me. I will have supports installed, but regardless, I cannot let him descend alone any longer, even with supports. He is just too likely to fall; it’s a long way down!
My heart is heavy. I cannot believe we have reached this stage of our journey; we have arrived at a particularly dangerous curve in the road. Transitions are rough. Emotionally, I’m not ready to be here, but realistically, there is no choice. It’s been nearly ¼ of a century since we signed on as man and wife. I never would have guessed that my loving, devoted, hard working, creative, dependable, inventive, talented, sociable Gilly, at age 53, would have so much trouble with mundane tasks we all take for granted, like speaking and walking down the very staircase he stripped and stained with his own capable hands just a couple of years ago. It is mind boggling, isn’t it? Life is so precious. So many things that seemed important in the past have paled in comparison to matters surrounding Gilly’s daily challenges.
Getting Gilly up and out of bed this morning took an enormous length of time, but I was not scheduled to go anywhere out of the house for work today, so it was not as frustrating for me.
We arrived late for physio. I stayed for the session. Thi confirmed that Gilly’s balance has worsened, but contends that if he religiously uses the exercise ball at home, he can recoup at least some of what he’s lost. He refuses to cooperate with me, though, when I try to have him sit on the ball at home. I told Thi that he will have to move in with us, since Gilly happily complies with anything Thi asks him to do. I hope to have the person I plan to hire for those two days be shown how to help Gilly do the exercises. Thi suggests I bring the person in for a session, and he will evaluate whether or not this is feasible. Gilly needs to be spotted very vigilantly at this point.
I called Sandra from the O.T. Dept. at the Neuro today to ask what gives. I hadn’t heard back from her as to a confirmed day and time for Gilly’s appointment. We last left it that she would contact me when she receives the referral from Dr. Kavan. Lo and behold, nothing has come forth as yet, although she claims to have left messages requesting that this be attended to. She explained that it’s not legal for an O.T. in her department to see Gilly without a referral; she suggested I call the Neuro Oncology Dept. to get some answers. I hung up and immediately left a message for Denise, the wonderfully kind and helpful coordinator who assisted me during the MRI CD caper. Moments later I received a call from her assuring me that the referral would be sent tomorrow, and that we are to keep Monday’s appointment. I left Sandra a message to that effect, and asked to let me know what time to come in on Monday.
Gilly wasn’t nearly as hungry as usual today, but fortunately I managed to convince him to eat most of what I gave him. He seemed more observant of his surroundings, and his answers, although garbled, seemed on topic. He was very low key (in relative terms of course; Gilly used to be incredibly energetic and enthusiastic). I do not usually spend the day with him after physio. I suppose it wears him out, and this is what I witnessed.
Gilly no longer walks downstairs alone. I forbid it. Instead, he follows along slowly behind me. I will have supports installed, but regardless, I cannot let him descend alone any longer, even with supports. He is just too likely to fall; it’s a long way down!
My heart is heavy. I cannot believe we have reached this stage of our journey; we have arrived at a particularly dangerous curve in the road. Transitions are rough. Emotionally, I’m not ready to be here, but realistically, there is no choice. It’s been nearly ¼ of a century since we signed on as man and wife. I never would have guessed that my loving, devoted, hard working, creative, dependable, inventive, talented, sociable Gilly, at age 53, would have so much trouble with mundane tasks we all take for granted, like speaking and walking down the very staircase he stripped and stained with his own capable hands just a couple of years ago. It is mind boggling, isn’t it? Life is so precious. So many things that seemed important in the past have paled in comparison to matters surrounding Gilly’s daily challenges.
posted by Gilly at 8:18 PM
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