Mom is in a NH and requires a lot of care. She is almost completely deaf and has aphasia, so unable to talk or understand most speech. She doesn't really know where she is. She is wheelchair bound and spends most of her day in bed other than mealtimes, when they get her up and take her to the dining room. My visits are usually during those times so I can see her when she's awake. She knows me - as in knows that I'm familiar and sometimes that I'm her daughter - but doesn't remember anyone else who doesn't visit regularly. Her quality of life is pretty poor and it is very traumatizing and scary for her if she is sent to the hospital for any reason. After seeing on here and other sites that Hospice can be added to a senior's care when they have dementia, I did that for my mom a few weeks ago. I thought it would be nice to have another set of eyes checking on her as well as knowing that if/when she gets sick they won't go to extreme measures to treat her. Recently the hospice aide found a swollen area under her arm while showering her. Initially it was thought that it was from assisting her with transitions from bed to chair, but after the doctor and hospice nurse checked it out they said it "could" be a lymph node. (no testing because she's on hospice) It's painful to the touch and exactly where they grab her to move her around. The hospice nurse prescribed pain meds - hydrocodone and morphine. I discussed with her (Hospice nurse) that mom is extremely sensitive to pain (or any) medication and that they should only use the hydrocodone sparingly and probably not the morphine at all. I reiterated this to the nurse on duty when I went out last week. I was called yesterday morning and told that I should call in the family because she had stopped eating over the past few days and was unresponsive and they felt she would decline quickly. I asked if she could just be over medicated and were they just giving her hydrocodone as needed? They were not. They were giving her both hydrocodone AND morphine. She was completely zonked out!! I asked them not give any meds that morning and to get her up and went at lunch time and fed her. She drank two glasses of liquid and ate pretty much her whole meal with me feeding her. She wasn't alert enough to be able to feed herself at all. They said that she had been unresponsive to their attempts to feed her. I met with the DON and was told that the hospice nurse was gone for a few days but that morphine was what she had prescribed so that was what they had given because "she's on hospice." I explained (as I already had to the nurse on duty last week) about mom's sensitivity to pain medication and reiterated that I didn't want morphine administered. My words were "I added hospice to make the end of her life better, but not to actually end it faster!" I went today and mom was back to "normal" meaning that she ate and drank on her own and jabbered away nonsensically. I plan on asking for a meeting with hospice staff and NH staff. My questions is whether or not my expectations are unrealistic. Is that what hospice is? The first sign of any illness they start administering drugs and (in my opinion) facilitating death? I have no doubt that if mom were given morphine for several days her body would quit and she will die. But that's not what I intended when I asked for hospice to come in. Maybe I need to be better educated about what hospice is. Maybe I jumped the gun by having hospice come in?
I myself had a swollen lymph node last week and it's thought to have come from the huge dose of flu shot I was given as a senior at 65 this year (for the first time). It was KILLING me, in fact, and I felt sure it was infected, which it could have been.......so my PCP gave me an antibiotic. But the swelling was going away on its own prior to starting the meds.
In my experience with hospice, they do not 'facilitate death' at all nor do they 'speed it up' by overmedicating. Perhaps you need to fire this hospice group you've hired if they are going against your wishes by prescribing BOTH hydro AND morphine when you told the nurse not to do that. I would be having a meltdown with them b/c I don't like these kinds of mistakes myself. When dad had hospice in to help him back in 2015 which was my first experience with them), he had a nurse who I felt was horrendous. I called the supervisor at the company who's card I was given at the onset, and told her to PLEASE NOT SEND THIS NURSE BACK to see dad ever again. One of the caregivers at the AL said "Gee, I hope to have you as MY advocate when I get old." In other words, I was probably overreacting but yeah, who cares? These are our PARENTS lives we're talking about here folks. So whatever you feel in your bones as an instinct, go with it and don't fight it. Every single time I fight my instincts, I live to regret it. I have no regrets over firing that hospice nurse, and would have fired the entire GROUP of them had things continued to go south, which didn't happen. But at least make your wishes known to this group and ask that ALL MEDS BE RUN BY YOU FIRST before the prescription is filled. That way you'll know for sure what's being administered to mom before it is.
Otherwise, fire this group and hire another hospice company you feel more comfy with. But no, it's not their job to kill your mother quicker than God is ready for her.
I know how hard all this is, and what I have found is that hospice IS a Godsend for our mothers with dementia who are in such bad shape; those extra hands and eyes on them are wonderful and a huge help. Hospice brought my mom a hospital bed, a new wheelchair she wouldn't fall out of so much, all sorts of supplies and then boots for when she became bedbound so she didn't get sores on her heels, etc. And again, the drugs were doled out with my approval only. Ativan helped mom a lot at the end of her life, and morphine was only given during the last week of her life when she was semi-comatose and a bit agitated. Her passing was swift and w/o incident, thank God.
Wishing you the best of luck with a difficult situation.
I wouldn't think they were purposely trying to hurt her? But they absolutely ****ed up. Seriously. I mean even if your mom can't speak, I would think pain would lead to like.. favoring the location, tears, strained/pained facial expressions, lack of wanting to eat *without* pain meds. I'm no doctor but if you can't trust this facility to not blindy dispense "cause the paper says so", yeah. yell. a lot. I've had drs put my mom of stuff I show up and rip her right back off of it cause she too is too sensitive to meds and I get to hear drs like "well blah blah is well tolerated in the elderly" when uh, it isnt. etc. I get to go on rampages for her a lot.
edit to let me add: morphine has been a godsend for my mom. how many years has she suffered from "air hunger" before this was even given as an option.. has me shaking in rage and tears. She suffered continuous oxygen / end stage for what... 7...8..9 years?? Able to move less and less, her world shrinking? And a dr could have fixed this? ffs.
You can ask the Hospice to change the orders for the medication for the time being. If she does not need the Morphine at this time they can withdraw the order. Later if she needs it the order can be done.
Hospice is not the mistake. The mistake is the facility staff medicating as they see fit to do so.
I think the thing that stands out for me is you hired hospice with the idea that it would provide extra care for your mother without taking into account the other side of the coin, that hospice is meant to be end of life care. Good hospice providers do everything they can to help people live their best life possible, bad hospice providers seem to focus only on imminent death and can be preemptive in pushing medications that should only be necessary once someone is actively dying. Just remember - you have the ultimate control, don't allow anyone to pressure you into allowing things you don't agree with or understand. Make them explain their approach to your satisfaction so there will be no regrets later.
No, your expectations are not unreal. Everyone needs to be on the same page concerning Moms care. My GF was the same way. She was very sensitive to meds. It surprises me when members have said "my parent refused morphine and he/she was given it anyway. I remember one member saying her father wanted to be awake as much as possible so no morphine. He was given it anyway. Don't think Hospice should work that way. I think we know how much pain we can take.