Change of face
I spent the better part of the day at home, even though Laverne was here from 8:00 to 5:00. I went for a routine physical check-up early in the morning, expecting to go to the library to complete my work for the rest of the day. I encountered a detour and my plans changed.
I decided that I should make a small order before heading to the library, since we needed juice and fruit. At the cash I was annoyed to discover that my Mastercard was not working. I left my order at the grocery store and returned home to solve the mystery. My card was duplicated, apparently and someone used it to buy gas in Florida early this morning. Little things like this send me over the edge; I remained home and took to my bed, trying hard to work, but it was not easy. The phone kept ringing and many important calls had to be attended to.
Will-Aide was one of these calls; finally, the transfer slide chair was ready to be delivered. I asked if they could pick up the equipment that we’ve outgrown at the same time, and they agreed (it’s amazing how quickly we’ve moved from one form of adaptive equipment to another as a result of the progression of the disease).
As soon as the two gentlemen saw the bathroom they asked if I really wanted them to install the pieces. I have been wondering for over a week exactly what the slide chair would look like, but I was unprepared for the reality. I asked how exactly it works. They looked at one another and admitted that it wouldn’t in this space; Gilly’s legs would be banged about and I would have great difficulty maneuvering him into the right position to slide over the tub. I had pictured a slide like you'd see in a park, and couldn't for the life of me figure out how I'd slide him back up and out when done.
We had a short discussion, and it was determined that the system would never work. They made an alternate suggestion, but unfortunately it will take days before we receive the euromode they mentioned. I’ll need a second person to help me bathe Gilly until then, or sponge baths in bed will just have to do. It’s just too difficult for me to move him from the doorway to the transfer bench on my own now that he really cannot stand anymore, let alone walk.
I was there to receive several calls from Brad as well. Finally, we managed to arranged the new caregiving hours; 11:00 to 2:00 every weekday except Wednesday (11:00 to 1:00 instead). This includes two baths offered by the CSSS, but delivered through Paraide, so as to reduce the number of people I will have to deal with.
Next, someone from the Association D’Entraide Ville-Marie called to say that someone would be here to bathe Gilly tomorrow at 2:30 (they'll come 3 times a week). I anxiously accepted the offer. Help is really on its way.
I managed to complete some of my work in between the ringing, and still found time to co-caregive with Laverne. It’s much easier as a twosome. Yaron and I work as a team during the night; he shows up just as Gilly needs attending to (I won’t mention what time that is). He awakens me as needed; this arrangement permits me to relax and fall into a deep sleep beforehand. I have always believed in the strength of collaboration; together we are better. Nights are becoming easier to manage.
Today, the change I noticed was a persistent shaking of Gilly's right leg when he is finished being moved from one place to another (wheel chair to soft cozy chair, for instance). He’s been doing this for a while, but the involuntary shaking was more pronounced today. His left hand shook a bit more than usual as well. I plan to ask the nurse about this next time she visits (on Friday at the very latest).
Gilly is now fast asleep with music playing in his room, thanks to Marvin who moved our new old sound system up to his room last Sunday. Gilly’s cousin Dave fixed our old turn table (almost 25 years old) about a month ago and we’ve been enjoying our old vinyls. When we got married and put our record collections together, we noticed that we share similar taste in music. Listening to the oldies is a pleasant way to spend time together. I look forward to more of this as my residual workload dissipates over the next few days.
I expect to go out tomorrow evening with my colleagues from Vanier. Tamara is scheduled to come over and spend time with her dad. This provides a nice balance for us all. I love to be home with Gilly, yet I need some escape from the brutal reality I face at every turn in our home. Gilly needs a change of face as well; I look very much forward to the opportunity to socialize with workmates. Time has not allowed me to do so at all this past semester.
I decided that I should make a small order before heading to the library, since we needed juice and fruit. At the cash I was annoyed to discover that my Mastercard was not working. I left my order at the grocery store and returned home to solve the mystery. My card was duplicated, apparently and someone used it to buy gas in Florida early this morning. Little things like this send me over the edge; I remained home and took to my bed, trying hard to work, but it was not easy. The phone kept ringing and many important calls had to be attended to.
Will-Aide was one of these calls; finally, the transfer slide chair was ready to be delivered. I asked if they could pick up the equipment that we’ve outgrown at the same time, and they agreed (it’s amazing how quickly we’ve moved from one form of adaptive equipment to another as a result of the progression of the disease).
As soon as the two gentlemen saw the bathroom they asked if I really wanted them to install the pieces. I have been wondering for over a week exactly what the slide chair would look like, but I was unprepared for the reality. I asked how exactly it works. They looked at one another and admitted that it wouldn’t in this space; Gilly’s legs would be banged about and I would have great difficulty maneuvering him into the right position to slide over the tub. I had pictured a slide like you'd see in a park, and couldn't for the life of me figure out how I'd slide him back up and out when done.
We had a short discussion, and it was determined that the system would never work. They made an alternate suggestion, but unfortunately it will take days before we receive the euromode they mentioned. I’ll need a second person to help me bathe Gilly until then, or sponge baths in bed will just have to do. It’s just too difficult for me to move him from the doorway to the transfer bench on my own now that he really cannot stand anymore, let alone walk.
I was there to receive several calls from Brad as well. Finally, we managed to arranged the new caregiving hours; 11:00 to 2:00 every weekday except Wednesday (11:00 to 1:00 instead). This includes two baths offered by the CSSS, but delivered through Paraide, so as to reduce the number of people I will have to deal with.
Next, someone from the Association D’Entraide Ville-Marie called to say that someone would be here to bathe Gilly tomorrow at 2:30 (they'll come 3 times a week). I anxiously accepted the offer. Help is really on its way.
I managed to complete some of my work in between the ringing, and still found time to co-caregive with Laverne. It’s much easier as a twosome. Yaron and I work as a team during the night; he shows up just as Gilly needs attending to (I won’t mention what time that is). He awakens me as needed; this arrangement permits me to relax and fall into a deep sleep beforehand. I have always believed in the strength of collaboration; together we are better. Nights are becoming easier to manage.
Today, the change I noticed was a persistent shaking of Gilly's right leg when he is finished being moved from one place to another (wheel chair to soft cozy chair, for instance). He’s been doing this for a while, but the involuntary shaking was more pronounced today. His left hand shook a bit more than usual as well. I plan to ask the nurse about this next time she visits (on Friday at the very latest).
Gilly is now fast asleep with music playing in his room, thanks to Marvin who moved our new old sound system up to his room last Sunday. Gilly’s cousin Dave fixed our old turn table (almost 25 years old) about a month ago and we’ve been enjoying our old vinyls. When we got married and put our record collections together, we noticed that we share similar taste in music. Listening to the oldies is a pleasant way to spend time together. I look forward to more of this as my residual workload dissipates over the next few days.
I expect to go out tomorrow evening with my colleagues from Vanier. Tamara is scheduled to come over and spend time with her dad. This provides a nice balance for us all. I love to be home with Gilly, yet I need some escape from the brutal reality I face at every turn in our home. Gilly needs a change of face as well; I look very much forward to the opportunity to socialize with workmates. Time has not allowed me to do so at all this past semester.
posted by Gilly at 9:28 PM
0 Comments:
Post a Comment
<< Home