A day at the circus
Today my house felt a bit like a circus for the first 4 hours or so. Josee-Marie asked me to grind Gilly’s food from now on because he is not swallowing properly. Yesterday, when she inspected his mouth at my request (since he bites my finger when I try to check his tongue for thrush), she found his pills disintegrating tucked in between his inner lip and his teeth. She explained why the crushing of the pills and food is the only way to go at this point with this information as her backup. I was taken aback. Perhaps she explained this in French yesterday, but I obviously didn’t catch.
While she was here a new caregiver named Cecille rang the doorbell. I was not expecting a change, so I was unprepared with new instructions for a brand new person, and so excused myself. At that moment the phone rang and it was Brad, back from his holiday wondering how the new caregiving situation was panning out. The poor guy got an earful. I walked downstairs so as to be out of poor, innocent Cecille’s earshot (not her fault and she seemed on the ball). Brad asked if I think it might be better to place Gilly at this point, but I said that I feel some of these matters could be worked out if there was consistency. It is tough over the holidays. I asked for 2 full days instead of 3 hours a day in the middle of the day, and mentioned that I would be willing to hire that same person privately for another two days. He said he’d try.
When I was done speaking Josee-Marie took the phone and asked Brad to arrange to send someone to stay over one night a week. She explained that that way we’ll have 2 nights covered, and I will be able to sleep.
When she hung up and saw my worried expression (I’m not good with change, as you all may have guessed by now) she questioned me again as to whether or not I feel it’s time to move Gilly to Mount Sinai. “I’m not ready. He seems to appreciate his surroundings and we can care for him better in our home,” I replied in a shaky voice.
Josee-Marie left and I went back to guiding Cecille through the now new ritual of caring for Gilly. She prepared his pills and Tamara ground up the pineapple. We waited, but he didn’t stir. Cecille left without ever seeing his eyes open, and I have no clue if she’ll ever return; time will tell.
Just as he was leaving, in walked Daniel; a revolving door, I tell you. He was not able to bring Gilly to the bathroom because he was sleeping too deeply, so he had a sponge bath instead. I hung around with Daniel to ask his opinion on moving Gilly to Mount Sinai. He assured me that Gilly is more than well taken care of, but agrees that the caregiver turnover is too stressful and that something must be done.
The doorbell rang and in walked Marilyn, the O.T. She was there to reassess our home in response to Cathy’s request (the CLSC nurse). She determined that we could accommodate a lift, but wondered where I would want to take him. She and Daniel both agreed that he is best left in bed where he is most comfortable for sleeping. I begged to differ, but was outnumbered. Daniel suggested we have a hospital bed set up in the living room because most home palliative patients are placed in the midst of the hustle and bustle of the home. The O.T. vehemently disagreed. I am now agonized with having to make the decision. We need a different hospital bed anyway, because this one has brakes on one wheel only, so I need to decide before the new one Marilyn orders shows up at the door. She will also send the lift to see if we can actually make use of it, and will come over to show us how to operate it.
Once these two people left, I was totally overwhelmed by anxiety and uncertainty. Too many decisions, and not enough knowledge and I guess strength to make them with assurance.
Barb stopped by for a few hours and we talked at Gilly’s bed side. I ruminated aloud about the pros and cons of all sorts of matters related to Gilly’s care and Barb listened. Gilly opened his eyes a few times; once to smile in greeting, and a few other times as well, but was never truly awake for any substantial length of time.
The phone rang on numerous occasions throughout Barb’s stay. Josee-Marie was one of them; she called to say that Francine Venne (Dr. Lapointe’s angelic right arm) will call me to discuss changes to Gilly’s medication. I took the opportunity to ask what she thinks about the hospital bed placement and she agreed wholeheartedly with Daniel. I gave her a short explanation of why I am hesitating (mainly to respect Gilly dignity) and she said she understands my point and she’ll be here on Saturday to go over the pros and cons with me.
It’s almost 7:50 P.M. and he seems to be awakening. Tamara, Max and I will sup with him in his room unless he seems strong enough to be moved to the dinner table.
It’s now 8:00 and his daughter brought him to the threshold of my office, all dressed and in his wheel chair; I guess the dining room it is! I have a dinner date, so I have to go.
While she was here a new caregiver named Cecille rang the doorbell. I was not expecting a change, so I was unprepared with new instructions for a brand new person, and so excused myself. At that moment the phone rang and it was Brad, back from his holiday wondering how the new caregiving situation was panning out. The poor guy got an earful. I walked downstairs so as to be out of poor, innocent Cecille’s earshot (not her fault and she seemed on the ball). Brad asked if I think it might be better to place Gilly at this point, but I said that I feel some of these matters could be worked out if there was consistency. It is tough over the holidays. I asked for 2 full days instead of 3 hours a day in the middle of the day, and mentioned that I would be willing to hire that same person privately for another two days. He said he’d try.
When I was done speaking Josee-Marie took the phone and asked Brad to arrange to send someone to stay over one night a week. She explained that that way we’ll have 2 nights covered, and I will be able to sleep.
When she hung up and saw my worried expression (I’m not good with change, as you all may have guessed by now) she questioned me again as to whether or not I feel it’s time to move Gilly to Mount Sinai. “I’m not ready. He seems to appreciate his surroundings and we can care for him better in our home,” I replied in a shaky voice.
Josee-Marie left and I went back to guiding Cecille through the now new ritual of caring for Gilly. She prepared his pills and Tamara ground up the pineapple. We waited, but he didn’t stir. Cecille left without ever seeing his eyes open, and I have no clue if she’ll ever return; time will tell.
Just as he was leaving, in walked Daniel; a revolving door, I tell you. He was not able to bring Gilly to the bathroom because he was sleeping too deeply, so he had a sponge bath instead. I hung around with Daniel to ask his opinion on moving Gilly to Mount Sinai. He assured me that Gilly is more than well taken care of, but agrees that the caregiver turnover is too stressful and that something must be done.
The doorbell rang and in walked Marilyn, the O.T. She was there to reassess our home in response to Cathy’s request (the CLSC nurse). She determined that we could accommodate a lift, but wondered where I would want to take him. She and Daniel both agreed that he is best left in bed where he is most comfortable for sleeping. I begged to differ, but was outnumbered. Daniel suggested we have a hospital bed set up in the living room because most home palliative patients are placed in the midst of the hustle and bustle of the home. The O.T. vehemently disagreed. I am now agonized with having to make the decision. We need a different hospital bed anyway, because this one has brakes on one wheel only, so I need to decide before the new one Marilyn orders shows up at the door. She will also send the lift to see if we can actually make use of it, and will come over to show us how to operate it.
Once these two people left, I was totally overwhelmed by anxiety and uncertainty. Too many decisions, and not enough knowledge and I guess strength to make them with assurance.
Barb stopped by for a few hours and we talked at Gilly’s bed side. I ruminated aloud about the pros and cons of all sorts of matters related to Gilly’s care and Barb listened. Gilly opened his eyes a few times; once to smile in greeting, and a few other times as well, but was never truly awake for any substantial length of time.
The phone rang on numerous occasions throughout Barb’s stay. Josee-Marie was one of them; she called to say that Francine Venne (Dr. Lapointe’s angelic right arm) will call me to discuss changes to Gilly’s medication. I took the opportunity to ask what she thinks about the hospital bed placement and she agreed wholeheartedly with Daniel. I gave her a short explanation of why I am hesitating (mainly to respect Gilly dignity) and she said she understands my point and she’ll be here on Saturday to go over the pros and cons with me.
It’s almost 7:50 P.M. and he seems to be awakening. Tamara, Max and I will sup with him in his room unless he seems strong enough to be moved to the dinner table.
It’s now 8:00 and his daughter brought him to the threshold of my office, all dressed and in his wheel chair; I guess the dining room it is! I have a dinner date, so I have to go.
posted by Gilly at 8:03 PM
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