Sunnyflmom
Member
- Joined
- Nov 26, 2012
- Messages
- 24
- Reason
- PALS
- Country
- US
- State
- Fl
- City
- Orlando
This is one thing about my mom's ALS that really irks me. Not the fact that she is non-verbal but the fact that many health care professionals don't document it. My first irritating encounter was when mom went to the ER last month and then got admitted for 6 days due to pneumonia. Initially in the ER I told the medical personnel that mom is non-verbal which prompted the question from them "Oh did she have a stroke?" I replied no, that she has ALS. Next question from them: "Oh so can she not walk?". No, I replied, it's bulbar onset which took away her ability to speak as well as swallow. Mostly blank stares. Ultimately upon her being admitted at 8 PM, the nurse showed her the call button on her bed. I asked if they would be sure to make a note that if she presses the call button that she will need assistance in person due to being non verbal. Her only mode of communication is physically writing on a white board (she refused electronic communication methods). Sure enough, next day while visiting, dad needed the nurse so he pressed the button. The response thru the intercom was "yes, can I help you?"
Thereafter various nurses, technicians would visit her for various reasons. They would always walk into the room and greet her verbally (which is nice of them) but they seemed to expect a verbal reply from her. Eventually they agreed to put a note on the door that patient is non-verbal.
The next time that I was peeved was last week while "mom-sitting" so dad could get out for a while, their home phone rang. I answered and could tell from caller id that it was her PCP's office calling. The person asked to speak to "Mary". Now I would not have been peeved if a random solicitor called asking to speak with her because they don't know her from Adam. But her PCP office should certainly know or have a system of notating before calling someone that they are non-verbal. I almost wanted to hand the phone to mom but would not have put her in that position. Or maybe tell them that I'd put her on but don't expect a response from the non-verbal patient. Ultimately I just said that she is non-verbal and that I'm her daughter. They told me they were confirming her upcoming appt.
Maybe I'm being too picky but the lack of knowledge from the medical community is very frustrating.
If I may expand briefly in another area, I was also displeased when we visited a dentist (upon moms extreme insistence) to attempt to get her mouth freshened up a bit. I told the dentist mom has ALS if she knows what that is. She shook her head. I called it Lou Gehrig's and she said nope doesn't know what that is.
Ok deep breath and asking God to give me strenght. :roll:
Thereafter various nurses, technicians would visit her for various reasons. They would always walk into the room and greet her verbally (which is nice of them) but they seemed to expect a verbal reply from her. Eventually they agreed to put a note on the door that patient is non-verbal.
The next time that I was peeved was last week while "mom-sitting" so dad could get out for a while, their home phone rang. I answered and could tell from caller id that it was her PCP's office calling. The person asked to speak to "Mary". Now I would not have been peeved if a random solicitor called asking to speak with her because they don't know her from Adam. But her PCP office should certainly know or have a system of notating before calling someone that they are non-verbal. I almost wanted to hand the phone to mom but would not have put her in that position. Or maybe tell them that I'd put her on but don't expect a response from the non-verbal patient. Ultimately I just said that she is non-verbal and that I'm her daughter. They told me they were confirming her upcoming appt.
Maybe I'm being too picky but the lack of knowledge from the medical community is very frustrating.
If I may expand briefly in another area, I was also displeased when we visited a dentist (upon moms extreme insistence) to attempt to get her mouth freshened up a bit. I told the dentist mom has ALS if she knows what that is. She shook her head. I called it Lou Gehrig's and she said nope doesn't know what that is.
Ok deep breath and asking God to give me strenght. :roll: