Yesterday, November 19, 2014, was another day I would as soon forget, but I dare not. It started normal enough with fairly competent aides. I had breakfast in the diningroom and retreated to the relative privacy of my shared room to rest up for my big quarterly appointment at the ALS clinic. I made it known that my appointment was this day and confirmed my transportation pick up with the nurse. I learned that my pick up time once again inadequate should we encounter traffic or other delay. I asked that the pick up be moved up to 11:00 or 11:30. She came back and let me know that it was moved up to 11:30.
My room mate also had an appointment as well but her noon pick up was noon and she was prepared accordingly. On the other hand, my pleas to hurry went unheeded. At 11:25 they finally changed my soaking brief unhurriedly, my sack lunch was delivered. Finally my brief was changed (single-handedly), then I was transferred by both aides. Incredibly, the aide most familiar with me went to help my room mate while the wiscracking male aide fumbled clumsily trying to understand me and retrieve my phone, purse, jacket, hat and scarf. I finally broke away yelling about what part of "I am late!" did they not understand?! I was most ungrateful and so exasperated!
I've gotten ahead of myself though...During my rest in my reclined power chair, I gagged and struggled to clear my airway of mucus that accumulated. My nurse arrived coincidentally to give me medications and supplements. I requested to use the cough assist machine. When she applied the mask, it was instantly apparent that the settings had been fiddled with it felt like regular breathing rather than a cough-producer. The nurse said she would return and went to the nursing station to retrieve the settings. When she failed to return quickly, I went to the station and learned that they did not have a record of the settings and placed a call to locate them. I would have to go without. The nurse said she understood that I would be frustrated. I told her that it was Frightening!
Why is it that the nurses fail to understand the importance of a cough assist to weakening chest muscles? How can this not be taken as serious. Being able to breathe is vital to live.
The next fail was when I traveled to the front desk to find that the home failed to schedule an escort to accompany me to my Doctors appointment. They know that their own therapy department won't allow me to propel my own wheelchair from the front door to the back and yet, this day I am able? I cannot feed, dress, nor toilet myself and I was sent out alone. My speech is unintelligible to most people and yet, I was sent out alone. And finally we, my husband and I, told the scheduler as well as the Director of Nursing Services, that I always require an escort.
Since I had no escort and hence no way to eat, it was just as well that my sack lunch remained back at the "home". Unfortunately, that meant nine hours between breakfast and dinner. And no medications.
My room mate also had an appointment as well but her noon pick up was noon and she was prepared accordingly. On the other hand, my pleas to hurry went unheeded. At 11:25 they finally changed my soaking brief unhurriedly, my sack lunch was delivered. Finally my brief was changed (single-handedly), then I was transferred by both aides. Incredibly, the aide most familiar with me went to help my room mate while the wiscracking male aide fumbled clumsily trying to understand me and retrieve my phone, purse, jacket, hat and scarf. I finally broke away yelling about what part of "I am late!" did they not understand?! I was most ungrateful and so exasperated!
I've gotten ahead of myself though...During my rest in my reclined power chair, I gagged and struggled to clear my airway of mucus that accumulated. My nurse arrived coincidentally to give me medications and supplements. I requested to use the cough assist machine. When she applied the mask, it was instantly apparent that the settings had been fiddled with it felt like regular breathing rather than a cough-producer. The nurse said she would return and went to the nursing station to retrieve the settings. When she failed to return quickly, I went to the station and learned that they did not have a record of the settings and placed a call to locate them. I would have to go without. The nurse said she understood that I would be frustrated. I told her that it was Frightening!
Why is it that the nurses fail to understand the importance of a cough assist to weakening chest muscles? How can this not be taken as serious. Being able to breathe is vital to live.
The next fail was when I traveled to the front desk to find that the home failed to schedule an escort to accompany me to my Doctors appointment. They know that their own therapy department won't allow me to propel my own wheelchair from the front door to the back and yet, this day I am able? I cannot feed, dress, nor toilet myself and I was sent out alone. My speech is unintelligible to most people and yet, I was sent out alone. And finally we, my husband and I, told the scheduler as well as the Director of Nursing Services, that I always require an escort.
Since I had no escort and hence no way to eat, it was just as well that my sack lunch remained back at the "home". Unfortunately, that meant nine hours between breakfast and dinner. And no medications.
I remember this day - I was at the desk when you came out. You asked the aide to put your purse on the back and he didn't. I interfered (because I truly thought he didn't hear you - he was in back of you and I was in front, and it was noisy at the desk) and told him you said to put it on the back. He was a bit miffed at me for that - I got "talked to." I'm sorry you had to experience all this frustrating and frightening stuff, hollow as that sounds.
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