r/hospice

Normally, I know the primary physician would recommend this, but my father's primary physician's office has been basically falling apart over the last year with multiple people quitting. The level of care from the staff (not the dr) has become really bad. I called Monday and explained the situation and they said someone will call back. Still nothing.

I have asked people I know for recommendations and they have no suggestions. I can choose based on online reviews, but that feels random. The home health agency my father had before also offers hospice, but I want to make sure I am getting him the best care. Any suggestions?

Thanks!

Context- my father is 93, congestive heart failure with rapid decline over the last week. Sleeping much more and eating/drinking much less.

Hello,
In a hospice setting (in a nursing home) how is an eye irritation treated? Yesterday one of dad’s eyes was watering and he eventually said it was itchy. He kept telling me it didn’t hurt but he’s not one to complain. He also has not opened his eyes much at all for 2 days, even when being fed. We don’t know if this is because his one eye bothers him or decline - which is showing up in other areas.
I got a quick look at his eye today and it was red inside but from the outside it appears normal. We are told to do warm compresses. Coincidentally or not his left ear has a sore on it which is being treated with triple antibiotic ointment. It’s the same side as his eye. I don’t see pus, just clear water from one eye.

Wondering what else can be done for him if tomorrow it’s still bothering him.

I was listening to an audiobook about hospice and I just wanted to come on this sub to read some posts.

Tonight I read, for the first time, that someone experienced the rally about a month before death, I've always read, for years that the rally is something that someone experiences shortly before death. You are dying, then random terminal lucidity, then sudden decline followed by imminent death.

I was never able to make sense of my dad's rally because he experienced that about 3 weeks or so before he died. Is it possible and what is your loved ones' story?

Also, is it possible for a patient to experience "mini rallies"?

For about 2 months my dad was in and out of coma, some days it really looked like he was getting better almost hope for him to survive, then just randomly decline shortly after.

But the "big rally" happened about 3 weeks before, where he was able to eat and was completely lucid.

Thank you for your responses!

My MIL enrolled in home hospice this week. She has lived alone for years and I’ve been her part time caregiver for the past couple of years, at most a few hours per day when I’m in town.

I recently moved to be near her.
Hospice nurse asked that someone be there 24/7. This is a big step for both of us compared to just a few weeks ago. My MIL is social but never really liked visitors in her home. I’d see her for a few hours at a time at the most.

Now I come see her she (politely but firmly) asks me to leave after a short visit. Nurse is worried about her fall risk. Which is real. She has a phone, a panic button, and daily visitors. So I’m comfortable with leaving her for now.

So is the nurse just doing her job and being conservative? Do I have a moral or ethical responsibility to be there 24/7?

Or, do I just take the risk of upsetting her and making her uncomfortable with my presence? (I do keep my distance when I sense she has tired of me).

Feeling conflicted. Thoughts?

My mother died from metastatic cervical cancer – I am struggling to understand what happened during her last 36 hours

My mother died on May27, 2026, from metastatic cervical cancer. She had extensive lung involvement and I know that her illness was very advanced. I am not trying to convince myself that she could have been cured or that she would have lived for a long time.

What I am struggling with is the way her final 36 hours unfolded.

On the evening of May 25, she was still conscious. She was on oxygen and her breathing was difficult, but she was able to eat and communicate with us.

During the night, at around 3 a.m. on May 26, her condition apparently worsened significantly. From the medical information I have been able to gather, she received midazolam and oxycodone, including boluses, as part of palliative care/sedation.

During May 26 she was extremely sleepy and only intermittently awake.

What makes this particularly difficult for me is that on the evening of May 26, she managed to wake up and speak on the phone to several members of our family. She spoke to her parents and to other relatives. It took enormous effort, but she was still able to communicate.

After that evening, she fell asleep again. I never had another real conversation with her.

She died the following may , 27 at 7pm

I understand that midazolam and opioids are routinely and appropriately used in palliative care to relieve severe breathlessness, anxiety and suffering. I also understand that dying from extensive pulmonary metastases can involve very severe respiratory distress.

But as her daughter, I am left with many questions.

I am trying to understand what medically happened between the evening of May25 and her death on May 27. Could the sudden profound decrease in consciousness simply have been the natural progression of respiratory failure? How much of it could have been caused by the midazolam and oxycodone? Is this kind of sequence typical when palliative sedation is started for severe dyspnoea?

There is also something emotionally very difficult for me: I am not completely certain that my mother wanted to remain sedated. From what I have been told, sedation was discussed with her, and she may initially have agreed and then expressed hesitation or changed her mind. I am currently trying to obtain and understand her complete medical records so that I can establish exactly what was documented.

I am not looking to accuse individual doctors or nurses without evidence. I am trying to understand whether what happened was medically expected and appropriate, and whether other families have experienced something similar.

If you are a palliative-care doctor, nurse, pharmacist, or if you have been through something comparable with a parent, I would be very grateful for your perspective.

I miss my mother terribly. I think part of my grief is that I still don’t understand what happened during those final hours, and I need to understand it.

Used by many onco/doctor to guess survival, it doesn’t take into account tumor progression, location or dormance for exemple. My wife is ECOG 3 in at home hospice which gives a theorical 3 months to live according to ECOG. But I’m second guessing it, really. Anyone?

My elderly mom(75) suffered a stroke and heart attack in early May and is currently on hospice care. She has been sleeping more than usual the last two days which is very concerning. I’ll wake her up and then she dozes back off within a minute. All her vitals look good. Is this normal?

Hello. I'm seeking some advice. My grandfather, (My Mom's father)has been diagnosed with lung and bone cancer at 80 years old. He has chosen not to do chemo but may try radiation. I call him once a week or so to check in. We live 4 hours away from each other. He asked for me to bring my teen and tween to visit before he gets too sick. I tell him maybe, when I can. He wants me to go on a Saturday and come back home on a Sunday.

Backstory: I witnessed my father's sudden shocking death from cancer 4 years ago and its given me severe PTSD and a fear of hospitals. I have nightmares because of it as well. My children witnessed him falling own in the process of dying. And they have been in therapy due to it.

One year later, I was with his father, my Dad's father's, death from cancer. He was at home surrounded by loved ones. I stayed at his home for a few days to help care for him until he died. It didn't affect me until a few months later and had to have my medication adjusted.

One year later, last year, my Mother's mother passed from cancer. I wasn't present and didn't go to her funeral. It doesn't affect me as much.

My therapist has told me not to go visit, it will be so bad for my mental health. But I have this horrendous guilt.

My Grandfather doesn't understand this PTSD and that if my teen and tween visit, it will bring up memories of them witnessing my Dads first process of his death.

A part of me wants to say "Fuck it. Take the mental health bullet and go visit him one day by myself. Even though my therapist recommends not to."

Or "Just dance around and avoid visiting him and make up stupid excuses for why I can't visit."

Thanks for any advice.

My grandma is in hospice and has been given days to live. She is my rock. She is everything to me. She raised me, lived with me, and I’m closer to her than my own parents. She went into hospice 3 months ago, and I was told it wasn’t the end. 2 weeks ago, I go to visit, and she’s crying to me saying she doesn’t know how much longer she has and she wanted to see me get married and all of these things. I feel horrible. I have this pit in my stomach that won’t go away. She doesn’t eat much of anything, sleeps most of the day, has hallucinations, constipation, and just looks like she’s in pain. It’s horrible.

For me, I live 4 hours away and it seems my visits are making her sad. Even when I left the last trip and my dad told me it might be the last time I saw her, she just couldn’t stop crying. She has a very frail voice and lost so much weight in a month, I could hardly recognize her.

At work, I can’t focus. I want to leave the second I get into the building. I’m sick to my stomach and dry heaving. Texting everybody for updates. For context, my job is great and very understanding- I have an extra 40 hours of annual leave I can use so I’m not bad on time off just don’t want everyone to hate me. I’m so on top of things but I feel myself slipping.

I just want someone to tell me the right way to do things. When do I leave early. When do I stay. Am I right to feel this way and just want to be home. Why is it when I’m at home I feel so much more distracted, but at work I’m a hot mess.

I think my biggest issue is not knowing when, and trying to overly prepare myself in hopes I won’t fall apart. Well I’m already falling apart.

And stupid chat GPT is not helpful, fuck AI I need real people to answer this with their experiences

I guess my question is, how does someone get through day to day life whilst dealing with this type of anticipatory grief?

Grief

I 16 F, have had a very rocky past with my mother, 32 F, and recently I have known for about a year or two that she has had a illness that we don’t know and don’t know a cure of as what she has told me I’m not trying to attack my mother, but my mother and I have had a very, very rocky pass and she is not the most reliable source and she had one of her lungs removed because they kept filling with fluid. I thought it was ammonia, but I’m not sure we had to talk yesterday and she sent me down and she’s already bought her tombstone and her casket and already paid for all of the funeral expenses and dinner as well for visitation of her body. She has mainly not been in my life because she has also caused that and I have tried to build a relationship and I feel like I will be missing more of what could’ve been than what was. She doesn’t have much time it could be tomorrow it could be a week. It could be a year. I have a very big pass with mental health issues and I’m not sure how I would carry myself or deal with the grief of my mother because at the end of the day, that’s my mother and I’ve always longed for her relationship and love. I’m making a list of the things I would like her to do when she passes and as well, as what are some things that you would’ve wished you could’ve asked your parents for that would’ve helped you a long life and dealing with grief.

I'm trying to figure out what is actually going on here with my father

My elderly dad is in late stage Lewy body dementia. We help him eat but every now and then he is able to do a few bites on his own. He’s pretty bad-just not down to the final weeks yet.

Lately it seems he forgets to open his mouth wide enough to eat. He sometimes does and sometimes doesn’t. I am also noticing a hard time using a straw. I have to help him and hold it steady as always but lately he seems to have a hard time sucking and also kinda plays with it in his mouth.

Does this sound typical?
He’s on a mechanical soft diet so the food isn’t the problem. It’s the mechanics of eating along with chewing so long.

Hello! My (36F) beautiful husband (36M) has been battling epithelioid sarcoma for about 4.5 years. It was deemed stage 4 fairly early on so we knew it was terminal and we were focused on prolonging life.

He has done so much to control the disease: surgeries, chemos, radiation, ablations, non-chemo medications, interventional radiology procedures etc. So many scans, so many visits, so many side effects, so many MyChart messages- just, so much.

He has had widespread but managed mets for some time but in the last 6 months a large liver tumor has caused issues. He got a biliary stent and two biliary drains in hopes of controlling his bilirubin to be able to get a radiation ablation procedure called a Y90. After an entire procedure to map and plan, and his bilirubin just eaching the acceptable level, we got a call from the IR doc who basically said I am willing to do the procedure but based on the anatomy I can only target part of the tumor and it may cause more bad than good for you (fevers, readmissions, etc.). He has also been having fevers with his drains that bring him back to the hospital.

Taking this all into consideration he has opted not to do any last ditch chemo, med or the y90 procedure and to transition to palliative care (in case of any last palliative radiation treatments and feeling we are not in a place that we need the full support of nurse visits or other resources yet as I am a nurse as well) and then hospice through the same company. He's still fully independent but fatigued, lower appetite, and clear decline over the last months. We met with the liaison today and she was so helpful. His goals are to maximize his quality of life and comfort for the remaining 3-6 estimated months he has.

He is so brave, reasonable and he has handled everything with so much grace. It never ceases to amaze me.

Despite knowing this is the right thing, and fully supporting him in his choices I can't turn off the fear. The fear that we are doing the wrong thing. Like maybe that procedure or med could buy us more time together. Like he's not sick enough yet. I know it's silly and born from love and wanting the whole life we planned together and having to face what we've been preparing for for years.

I guess I'm looking for people's experiences with people who transitioned when there were still options (not curative but could technically help) but they weren't worth the negatives. Also for people who are younger as I have trouble finding stories. Or general reassurance that the fear is normal but the decision is correct.

I'm so scared and he's truly just the best- my everything. I want to support him in any way I can.

Thank you!

Yesterday my grandmother was in a serious situation very sick and we took her to the hospital and the whole night she was struggling heavily and my mother was closely monitoring her. Later she stopped talking, her heart stopped breathing after my mum checked her and my dad checked her too. For 30 minutes they tried to check the granny again nothing changed her pose stopped.. she called her relatives and announced that she had died. But 3 hours later my uncle came she noticed that her body was still warm that she might be alive. Now they have taken her to the hospital for checkup waiting for feedback... The granny is my mum's mum... If she is alive will the family relatives blame my dad on it? If that happens what can he do am scared for him, and if the granny is really gone, will that not affect the relationship between my dad and the relatives both way if whether she is oky or not... Am scared 😨😨😳. This situation is critical.... I myself couldn't check on her pose coz I haven't been oky am sick been on my bed.

My mother was diagnosed with pancreatic cancer 2 years ago this month. It was decided to be inoperable. Over the course of 2 years she has very slowly declined, and in June of this year she made the decision after a rough hospitalization to stop her chemo and hospital trips, and move onto hospice. She has had Parkinson's for years now, and had reached the point where it was becoming extremely hard for her to get up and out of her recliner, and she was tired of the pain going to hospitals and chemo were causing her.

Finally, on July 26th, my dad called me to the house. My mom didn't seem to be in her right mind, and all she would talk about is asking us to reposition her to try and ease her pain. We suspected a potential UTI as her and her mother both get hit hard by them mentally when they set in, but the hospice nurses believed what we were seeing was a transition to end of life. They established a firm routine of morphine and lorazepam, and so me and my sister moved into my parents house as we were told she probably had less than a week left, maybe two.

For a few days my mom could still talk a little but it was so faint, barely able to whisper out words. Eventually that stopped though and she started only being able to make sounds and noises. We went through a couple of weeks of keeping good rotations on her as she rested peacefully, awaiting the end.

After 2 weeks my sister could no longer stay. She had to go back to her life. Now my dad and I are with her. She moans and hurts, cries in pain, and my dad and I are suffering with her. We don't want her in pain, and that is all it seems like she is enduring. We've had her medicine upped and upped, now they've added fentanyl and halidol to her medication mix, and still she she moans and hurts all night and day. She hasn't eaten or drank anything in well over a week or more.

It truly feels like we are just forcing pain medicine into her as she slowly starves and dehydrates to death. Her skin looks as good now as it did a month ago. Her hands are still warm. We are getting to the point that I'm concerned that the day we moved her to this treatment wasn't a sign her organs were failing but may have been something like a stroke has been misdiagnosed.

I'm mostly just looking for comfort. This is excruciating. Staying up night after night with her as she moans and groans is going to haunt me for the rest of my life. We thought earlier this week she was at the point that she was about to fade out, and then today she hurt so bad she woke up and cried, full on bawled from pain. Pain through fentanyl, morphine, lorazepam, and halidol.

We asked hospice to help us because we didn't want her to suffer. Nobody told us it would be something as miserable as this has been. Its going to haunt me for the rest of my life.

PREVIOUS RANT LINKED BELOW
https://www.reddit.com/r/nursing/s/l3nZhkF9Kq

So Friday was my last straw. I have my schedule set to have light Friday’s because we have mandatory meetings every morning at 8am-8:15, 8:30 IDG that lasts 2 hrs, and another mandatory meeting at 4:30pm. Every single Friday. I had 3 patients to see already and those visits lasted some time. I got to my last patient and OF COURSE my coworker said she has a migraine and apparently her vision is blurred. She said she’s making phone visits to her other 2 patients but she has one patient who HAS to have a home visit. The part time nurse only works M-W so guess who has to see them? Me.

I got to the home at 3:30. As previously stated I was thrown out so I haven’t seen MUCH AT ALL. This patient is declining and had a drain and the family wanted me to drain it. They were already frustrated because I felt it was best the patient stay in bed because they were exhausted but they INSISTED on her on getting up to pee. I was frustrated because it took 45-50 min to get to the bedside commode (not the patients fault so of course my frustration isn’t with them. It’s with the family). But the family mentioned the patient needed the drain to be emptied (the drain that releases fluid from her abdomen). I HAD NO idea how to do this. I apologized and said I’ll step out and call the nurse this patient belongs to and get instructions. The husband said to me “don’t worry I’ll do it. I’m better than any nurse in this company” and I said “im sure you are. You go ahead and show me. I’m frustrated also, sadly I was trained for a few days and pushed out so yes. I have to call for help. It’s frustrating for us all” … I guess he felt bad and started instructing me on something a nurse SHOULD’VE been trained for. Another family member in the home said to me “your management failed you, it’s not your fault” and I completely agree. I apologized to the family after I left and fast forward I called their nurse.

She says to me “I’m going to be honest, I’m usually there for a while as well” and now is the time to tell me? When I’ve worked 45 more min over the time I’m off the clock? Then she says “if you ever need ANY CALL DAY then I’ll do it” and I said “mm kayyy” and she said “no seriously I’ll take one for you”.

On today I asked if she can take my call for Saturday. As previously stated I was placed on call prematurely … and yes I mentioned this on Friday as well to the DON and she said to me “i can back you up on Friday and Sunday but not Saturday”. So I asked the other nurse if she’s able to take my call Saturday since I don’t have backup. She suddenly can’t take call anymore this month because of track meets with her kids.

And this is my final straw. I feel I’ve been pushed over and thrown the short end of the stick this entire orientation process. But I said all that to say I’m placing a 30 day notice in on tomorrow. The only reason I’m giving 30 days is because I don’t have anything lined up. They’ve literally pushed me out the door.

Dad fell and hit his head two days in a row, and AL sent him to trauma center both days. 2nd day was due to apparent seizures. Trauma center says they dont think he had seizure/s but don't know what caused the seizure like spasms. Two Cat scans indicated no brain bleed and was no different from Cat scan results from when he was last hospitalized in June.

Hospital keeps medicating him and now they're not feeding him because a recent swallow study indicated that nothing is actually going into his stomach.

Dad hates hospitals even when he's in his right mind, and now with his dementia and hunger and lack of medication, [they dont give him anything by mouth unless crucially needed] he's been combative and has been punching at caregivers and saying extremely inappropriate things. They have him in restraints because he keeps trying to yank out his IV and get out of bed. As far as he's concerned, he's outta there!

We've asked them to do a culture or something for a UTI because he grows some kinda nasty stuff and usually needs a really high powered IV antibiotic. But Dad is making his own care 10 times worse, and all they're thinking about is this feeding tube thing for now. Meanwhile, they're dealing with his combativelness and seizure episodes by doping him up. Which isn't helping.

I really wish they would just check for the UTI before they release him, but they're insisting on addressing this feeding tube thing first.

Doctor won't let him eat unless we sign a liability release because they're afraid he will choke even on liquids.

Fine. I'll sign the release.

Issue is that Dad just wants to go home. Problem is that I'm convinced that he will be released to his AL only to have th AL call the ambulance again when he falls again.

I think this is another reason that the hospital doc would only release him to hospice care.

I don't think Dad is psychologically ready to die, and I hate to elect hospice for him. Hospice means (I think) that he won't continue his dialysis. Without dialysis, he will die in maybe a couple weeks?

Does anybody know if dialysis can continue while a patient is on hospice?

Since he can't swallow due to a growth that blocks the passage of food to his stomach, our options about nutrition seem to be:

1. sign a release of liability for the hospital and releasing doctor and take our chances if he will choke to death. I wouldn't want my Dad to die that way.

2. Make him endure a feeding tube. I think in Dad's altered state, he will remove it himself.

3. Elect hospice and he will die.

I doubt his AL will care for him at the level he needs and I dont think hospice is on duty 24/7.

Does anyone have any insight into any of this situation? Don't hesitate in telling me uncomfortable truth that I may not appreciate or realize. I need to know what Im really looking at and would appreciate all input.

Would hospice be the kindest thing for him at this point? [And that question sounds horrible.]

Thank you so much

An article on cbsnews.com about hospice, mostly about getting kicked off hospice, emphasized using the Medicare hospice ratings to avoid such things.

But a few months ago, someone in the Boston sub asked about a local hospice system. Lots of people responded favorably, but when I pointed out the 3 star out of 5 Medicare rating, I got downvoted.

This leaves me questioning whether the Medicare ratings are really that reliable. Or maybe it’s because the company’s at-home service isn’t as good as their dedicated hospice houses. Ordinarily, I’d discount a couple of glowing online reviews, but in this case, there were about 20 positive reviews, none negative except mine, and the company in question is non-profit.

In case anyone is wondering, I’m researching this because my husband has glioblastoma. He’s currently in pretty good shape, but we know that when the cancer returns, it often does so with a vengeance, so we want to be ready.

I'm the caregiver to my mother (stage 4 cancer), who has been on home hospice since August 1. Last night, things took a turn for the worse when we had to give her oxygen for the first time ever. Without oxygen, her levels drop to below 90% fairly quickly. Her blood pressure, which has been averaging around 138/72 over the last few weeks has now dropped to around 93/61 (just checked).

At 5:00 AM this morning, I called the hospice agency to ask for a continuous care nurse, and the hospice agent said that if my mom isn't "visibly agitated" that there is no need to send out a continuous care nurse. My mom has been on sublingual morphine 0.25 since Thursday, and at the moment, she is NOT "visibly agitated" and hasn't asked for pain meds since 6:00 PM yesterday evening (it is currently 6:00 AM here).

Am I incorrect to assume that the hospice agency should provide a continuous care nurse for my mother, whose death I believe is imminent? I'm just trying to make sure that my mom and my family have all the support that we need in my mom's final days/hours. Thank you.

*Edit: Thank you to all those who responded with information, kindness, and compassion. 🙏❤️

*Edit: My mother passed this afternoon about 8 hours after I wrote my OP. 😪 I am heartbroken and devastated, but she is finally at peace. ❤️

Hi everyone!

I want you to meet my mother. Her name is Patricia Choinsky, and she was the epitome of the Proverbs 31 woman. She went to be with the Lord February 10th of this year, and due to weather, we couldn't hold a funeral for her. Now, we have an opportunity to celebrate her life, and we need your help. We have expenses pertaining to the place we're holding it at, as well as needing food, and any amount that you can give would greatly help.

My mother was a person who believed in putting Christ first, and helping others, and I pray that that same generous, compassionate spirit will be found in all of you.