(I’m sorry I’m behind on reading all the posts. I promise to catch up!).
The post today is brought to you by the letter “C.”
Care Home. Conflict. Communication. Crying (ugh!). Cautiously optimistic.
New Home called me earlier this week to schedule a meeting. Those involved in the meeting would be the Nurse, House Manager, supervisor of house manager, supervisor of the supervisor of the house manager. And me. (Four against one? Is that all you got?) I actually called to invite the counselor from the Regional Center and he, thankfully, was able to attend a portion of the meeting. I think he’s on my side but it’s hard to tell.
Their objective: to “clarify” communication. Gee, brilliant idea.
My one slight irritation is that they beat me to the punch and called the meeting first. I got over that fairly quickly and next went to “bring it on” mode.
The meeting was held today and lasted two hours. Whoa! Two hours of . . . communicating! It started with them stating their objective of providing good care for Robert.
I said that would be great! How about we start with not ever trying to take him to the ER to have a needle stuck in his you-know-what in order to get a urine sample when he can PEE IN A CUP AND WHICH YOU WOULD HAVE KNOWN IF YOU ASKED HIM OR ME?
I felt better about getting that out but it may have led to a rocky start of the meeting.
The nurse started to lobby for me not going to another doctor (meaning, Robert’s neurologist) and obtaining orders without her knowledge. She told me it just means she has to call the doctor to discuss and it’s better if she just obtains the orders. I explained that if it was in Robert’s best interest to get an order for medication or an x-ray or lab work, that I would do it. Sorry. I can’t agree to step aside and let the person who on day two changed his medication schedule (for convenience resulting in numerous seizures), or who insists on a CT scan every time he goes to the ER (which has been unnecessary according to the actual ER doctors and refused by me on Robert’s behalf), or was supposedly in charge of the “let’s take him to ER for a catheter” idea.
I can’t trust a nurse who clearly is trying to find the easy way out. I won’t do it. I said I won’t do it and the supervisor of the supervisor said, “I hear you saying no” to this idea. Um, great listening skills. Heck yeah, I’m saying no. She didn’t know what to say at that point (the others were quiet throughout the meeting).
Apparently, they are not used to being challenged.
We discussed the topic further and the nurse finally said the magic words: I don’t have to ask her permission to do these things (wow, thanks for that). She said she would appreciate it if I either called or texted her to let her know what I was doing which I agreed to do. I’m a fan of direct communication so will be in touch. (Be careful what you ask for, though.)
The meeting then turned to Robert’s physical decline, his increased balance problems and the troubles he has moving his right leg. We discussed his recent memory problems (not remembering having a meal or his roommate’s name) which led to a discussion of whether or not Robert has had a mini stroke during one of his seizures.
My tears betrayed me at this point and started to flow but I groaned, accepted the gift of a tissue and continued. I agreed it was a good idea to have an MRI to see if he has had a stroke and suggested we get any tests done before he sees his neurologist later this month. That will allow the neurologist to review test results at the appointment. We also discussed getting him a sturdier helmet as well as a sturdier walker. We discussed nutrition and I questioned them about providing more fresh fruit and vegetables. They assured me Robert is provided lots of fresh fruit and vegetables but I have lingering doubts about that. I decided it was something to push them on another day.
By the end of the meeting, plans were set to have Robert assessed by a physical therapist, an occupational therapist (who can help with the new helmet and walker), taken to a lab for an MRI (not the ER as the nurse actually suggested as an option – are you kidding me?! Are you not listening?!).
Plus, I have the nurse’s phone number and will be communicating with her. A lot.
I felt my objective of protecting Robert was met, that my voice was heard and that they know I cannot be marginalized. As I told them, I hope their actions match their promises. I felt the meeting ended on a positive note, although, I somehow suspect the nurse and I will not become BFFs. (She barely looked at me when saying our goodbyes).
Overall, I am cautiously optimistic. And very, very tired. Conflict wears me out!