I am an undesirable. I have ALS. I take up way too much caregiving time. Oh, doubtless the caregiving industry wants the dollars we generate to fill their coffers, but we are a losing proposition.
I've been in two managed care facilities now, and I can tell you stories of overpromising and underdelivering. Mismanaging, getting lost in the system, ignored call bells, not bothering to learn the disease process, and critical think solutions, train carestaff to the deficits. More than half the staff of this well-rated skilled nursing facility, could not verbalize what ALS is, I venture to say. And they are the best thing going for the ALS patient.
I've been in residence for two years now, and the caregivers that attend me day in and day out, do not grasp the concept that I am safer, from a breathing standpoint, rolled up on either side, rather than be positioned flat on my back, where I'm subjected to the weight of gravity pushing down on my chest.
For the first year, this place was a palace, in comparison to the last skilled nursing facility I lived at. As I'm progressing (deteriorating), the gap is narrowing. I'm left for hours to languish, alone. My call bells are ignored, or responded to remotely, without checking if I'm having difficulty breathing.My bathing is a low priority. I used to enjoy bathing three times per week and have to "ride herd" on the caregivers to get in just once if the occupational therapist has a conflict. My room is dirty, especially regarding dust build up, Which affects my breathing.
Worst of all, caregivers don't have any obligation to communicate with me. They enter my room, ask what they can do for me, and when they don't understand me, they say they cannot understand me, then out they walk. No effort is made to reach for the alphanumeric communication boards hanging beside my bed, nor do they reach for my AAC device (Tobii), also beside my bed.
It must be time to die. I cannot take the neglect, the lack of dignity. It sucks to be here.
I've been in two managed care facilities now, and I can tell you stories of overpromising and underdelivering. Mismanaging, getting lost in the system, ignored call bells, not bothering to learn the disease process, and critical think solutions, train carestaff to the deficits. More than half the staff of this well-rated skilled nursing facility, could not verbalize what ALS is, I venture to say. And they are the best thing going for the ALS patient.
I've been in residence for two years now, and the caregivers that attend me day in and day out, do not grasp the concept that I am safer, from a breathing standpoint, rolled up on either side, rather than be positioned flat on my back, where I'm subjected to the weight of gravity pushing down on my chest.
For the first year, this place was a palace, in comparison to the last skilled nursing facility I lived at. As I'm progressing (deteriorating), the gap is narrowing. I'm left for hours to languish, alone. My call bells are ignored, or responded to remotely, without checking if I'm having difficulty breathing.My bathing is a low priority. I used to enjoy bathing three times per week and have to "ride herd" on the caregivers to get in just once if the occupational therapist has a conflict. My room is dirty, especially regarding dust build up, Which affects my breathing.
Worst of all, caregivers don't have any obligation to communicate with me. They enter my room, ask what they can do for me, and when they don't understand me, they say they cannot understand me, then out they walk. No effort is made to reach for the alphanumeric communication boards hanging beside my bed, nor do they reach for my AAC device (Tobii), also beside my bed.
It must be time to die. I cannot take the neglect, the lack of dignity. It sucks to be here.
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