Monday morning, the nursing home calls and the are sending Mother to the ER. Same thing, different day. She had just finished the last antibiotics she had been on three days before.
I met her at the hospital and they had already ordered antibiotics. I put a halt to those and after a few hours, a long talk with hospice – part of which was telling them about her DNR and living will – we decided to send her to the Hospice facility.
Hospice doesn’t work exactly how I thought it did. I always thought you get close to the end, you move there and well, basically they keep you drugged up until you die – no matter how long it takes.
Throughout this process, I have found that while that is true – it is not that simple.
Hospice took over care of her major problems- basically, bluntly, the disease that is killing her, faster every day it seems, her COPD. While the nursing home doctor still takes care of the other things, her blood thinners, blood pressure meds, thyroid, stomach meds, the hospice doctor takes care of her lungs and pain. The hospice doctor has a great deal more leeway with the pain meds and narcotics than the nursing home doctor as he provides for end of life care – the part about keeping her doped up until she dies.
I followed her to the hospice facility and as we got her checked in, went over a bit of her meds, etc. Filled out her menu and I went home. I assumed that they would follow the med list that she had been ob and that the word had been passed about no antibiotics. Remember the saying about that word, “assumed” – ass out of u and me – well…
I got there Tuesday morning, after voting (I voted, did you?) and before work. The nurse came in to give her the morning meds – timing, huh?
This is the kicker. She told me they had done a urine culture and started her on an antibiotic for a UTI. NO. She is not to have antibiotics. “The dr. started her on them just in case of a UTI” No antibiotics means NO ANTIBIOTICS. PERIOD. ” Is this the rule at the nursing facility? The ER? Because those do not apply here” NO. This is in her living will. “why not? It is for the UTI. You are going to need to talk to the doctor” No antibiotics for anything. The antibiotic for the UTI is going to also treat the pneumonia and she will get better(ish). Then in two weeks we will be right back here. Which is what she does not want. She is tired of the merry go round.
She held it, but gruffly told me I needed to speak to the doctor. Fine. As I left, I put a note on her table with a message for the doctor to call me. I am still waiting.
I went back up after work, and the chaplain was there, so I didn’t stay long with mom. I found the nurse in charge and we went over the med list. I have had to learn to reign in my temper. These things make it difficult. Everyone is not on the same page and I really though that is how this was supposed to work. UGH.
They changed some meds, they don’t have some of her meds on site. These meds are not necessary. Grrr. I walked away, with a stern look and asked her to please have the doctor or LPN call me. I forgot something and turned around – she was on the phone with her and said she is at the front office if you want to talk to her.
I meet her ….she tells me about the meds not on site – her stomach meds – without these meds she can not eat. She put her back on 2 that she doesn’t need to be on because the CDIFF seems to be returning, but they don’t test for that. They changed one because mother said she had been on it forever and it didn’t seem to work – so they put her on one that she took before that does NOT work . The one she has been on – that DOES work. The paperwork says that they have to talk to ME for changes. ARGH!
When I went in yesterday morning, she seemed to be feeling better. The afternoon, not so much. She said she felt worse and looked like she was feeling worse.
I am fairly certain this is because she was on the antibiotic and then she wasn’t.
How crappy do I feel now? Very. I know this was her decision. We talked about it between ourselves and with the staff at the nursing home. Still. She was feeling better and 8 hours later….
I thought hospice was supposed to help make all of this easier.
Of course, nothing with this experience has been easy.