Hospice has been banned from visiting mother at her rest home. Very confused. And is Ensure a type of artificial feeding?
Mother has 7c or worse Alzheimer's and has been on hospice for the last 6 mos. She's down to about 65 lbs. Her home has been in lockdown since the end of Feb but she's been the only one confined to her room - she's the only hospice patient at the time (fewer than 25 in the home). She's wheelchair bound and does not speak, but was normally rolled out to the TV room. Because she had an aide provided by hospice, they kept her isolated since there was that outsider coming in and out, and the other aides just go home with their families.
Now Mthr's aide has been exposed to a positive case with a patient at the next nursing home down the road. Mother's home has **banned** hospice from coming in, both with the aide and with her hospice nurse banned from examining her. Instead, the home is trying to get mother's previous housecall doctor to come swab her for the virus.
I've known the owner/director of this home for many years before mother became a resident 8 years ago. Hospice was fine with her living here (it's not nursing care, but they do a great job feeding and changing diapers) and said it was not necessary to move her to a nursing home 6 months ago. Now... I have no idea.
The home called me to tell me about this yesterday afternoon. They requested me to send Ensure to her so they could try to get some calories in her. I think they are worried now about her dying on their watch when they have banned hospice (I do think they have her kit). She was eating one meal a day we know from the aide who fed her breakfast every day. The home says she spits out food and pushes their hands away.
Mother was missing something important inside all my life, so I'm happy not visiting her again. Hospice and I are concerned as she has a couple of pressure spots on her legs that have developed in the last 3 weeks (since lockdown) and a suspicious spot on her bottom that has not turned into a sore yet. Without attention, these will become painful and deep bedsores. I do feel compassion for her and don't want her to suffer.
Mother was very specific in her advanced directive that she wants no antibiotics, surgery, or artificial feeding if she's terminal within a year. I'd say we are there. I don't know if Ensure would count as artificial feeding.
What are y'alls thoughts?
8 Answers
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I am sorry that you are facing this surprise. I think I would request a different hospice be brought in or just different employees from the current hospice. I pray that everyone involved recovers their health.
My heart aches for you that your mother is STILL alive, at 65 lbs, and withering away like this on a daily basis. The human spirit is un-freaking-believable, isn't it? I am so with you on the not wanting your mother to suffer, yet she is on such a disastrous path right now it sounds like. Sending you a hug and a prayer that God takes her SOON.
I think “artificial feeding” may mean tube feeding. If she's able to swallow safely and consume Ensure, your hospice would probably consider that natural feeding, but at that age, every case has its own demands and expectations.
I know they have straws at the home. The director of the home said they are banning all hospice workers now, so there's not an advantage to changing. I think I go with pushing the staff to make sure there's no skin breakdown.
What about omnibudsmen? Would that help get a hospice aide back in?
Ensure isn’t as it’s a drink & she can refuse.
if she’s dairy sensitive, you might want to send Boost as fruit based.
My moms hospice had her on & they provided a small canned product called TwoCal * HN with probiotics. It’s by Abbot Labs and comes in a little tin can with a pull top. What it’s about is it’s good for those who can only really do “low volume feeding” as it’s packed with calories and proteins even if it’s just 1/3 of the can they drink. It is not near as cheap as Boost, but hospice ordered it and Medicare paid for it as part of hospice benefit.
As others have said, there should be a new hospice group happening for her. Her facility likely / hopefully has 2-3 hospice providers. It’s Medicare so can be done. I changed my moms hospice group at 2nd mo, it was pretty perfunctory MediCARE paperwork.
I feel for you as my mom was on hospice, bedfast for 18 l...o...n...g mos. she too got tiny, weight in right under 60 lbs at the end. I found it stunning that one could get that small. My RN cousin, said it actually not that usual as there’s no energy expended, no calories used. If they are getting liquids, they can go on quite a while. Staff can check her pee output as that helps figure out if they are getting enough liquids to keep going. For me the hard part was, it was like watching a self mummification. It was eerie, I don’t recommend it. Mom was still talkative till the end & sometimes she totally knew who I was and who her adored grandson was although she most of the time last 3-4 mos, thought I was her aunt who lived with them in 1920’s and died 1930’s. I liked to think that she had put herself back to years when she was happiest, young, still in school.
oh also the probiotic part is important as it’s better on the digestive process and you might want to send a pack of bendy neck style straws to make it easier for her to suck whatever drink she gets. For us, the drinks were 1 time only served, even if it was just a fraction of the bottle or can. Then into garbage. So look for smaller sizes if possible to find.
yeah it’s really hard at this phase and this way before Covid concerns.
Is your mother also refusing personal care from the NH's own aides? I realise we're all trying to make allowances for incredibly difficult circumstances, but seeing as their solution is to turn away your mother's care team I think you'd be justified in threatening them with the wrath of God if they don't keep on top of her skin integrity.