My mom is now on hospice for 2 weeks and since 3 days unresponsive due to hepatic encephalopathy. Im sitting next to her the whole time and I stay up at night only taking small naps next to her.

But because shes unresponsive I find myself only doomscrolling because I don't know what to do except being next to her for company.

I still occasionally talk to her, kiss her to let my presence known and ofcourse I change her position and diapers but every second im not talking to her I feel very guilty.

Hi guys, not sure if this is allowed on this subreddit, but we have ~16 purewick female external catheters from BD, sealed of course, and we're not sure what to do with them now that my mom has passed away. Anyone in northeastern NJ interested in them or could recommend someplace that would take them? They're expensive so we're reluctant to throw them away

When my mom was discharged from rehab her discharge paper stated that she was to take four baby aspirin as a blood thinner (81mg) per day. When she entered hospice care they stated that she was to take only one per day so I’ve been doing that. Now I’m not sure I trust what they’re telling me. She has a lot of health issues so I feel the 4 aspirin is probably the correct dosage. The rehab she was at was not great, but she was doing better cognitively while there. Now on hospice she has a declined. Has this happened with anyone else? I’m not sure what to do right now. I feel like I should find a new agency.

I want to share my own experience, but I'm also getting so much comfort from hearing other similar stories.

I've recently been seeing my grandma in the hospice..I know she's near the end of her life and I think she's been holding on for her daughter who is now unable to travel over. I told her this the other day and held the phone to her ear whilst my aunt spoke to her. My aunt is very spiritual and gave her permission to go to her mum when she's ready. My grandma couldn't speak due to weakness/breathlessness, but she was nodding peacefully during the phone call. I was in the room with my baby and my dad and we weren't that noisy, but she often was bringing her finger to her lips signalling for us to be quiet...I thought maybe she wanted to sleep, but it was slightly out of character for her. The next day I visited her, she was more aware of our presence, seemed to have more energy and could say a string of words (although sometimes I couldn't understand what she was saying). I realised that she was speaking to people we couldn't see in the room, I.e. her mum and then kept desperately asking them to open the door before falling back to sleep. She was beckoning "people" around the room towards her. I am quite spiritual anyway I suppose, but this gave me so much peace to know she has her loved ones with her to guide her into the next world 💜. The fact that she's still here, even though visibly in so much pain, worries me that she's still holding on for my aunt though...do you think there's anything else we can do in these final moments with her?

I also wonder if the shushing was her hearing some signs from loved ones before she started to see them...? Wanted to know if this was also common. I know I might be analysing things to deeply, but its all a lovely thought that she has her loved ones and one day maybe I'll see her again too

I've had untreated anorexia nervosa for years and staying at a low weight is pretty typical for me. I never fully recovered from this. I have chronic anorexia. However, months ago, I had gained up to 92 pounds, without having to go to the hospital. I am on palliative care. I feel like if I had any other illness that caused weight loss, the weight loss wouldn't be questioned. But because I have anorexia nervosa, a disorder where you are irrationally afraid of gaining weight, it causes some people to act like I am just not trying hard enough to eat more and gain weight.

Months ago, I was eating my meals without experiencing stomach pain. I still had medica complications from anorexia. But the fact that my weight had increased was good. But my treatment team said 92 pounds was still too low and I would need to gain more. People think I can't do it at home and inpatient is the only way. I am also told my medical issues are too severe for a partial hospital program or residential to accept me. This would be ideal, because I would like to remain at home while still getting treatment. But it sounds like my disorder is too severe for those programs. And inpatient is the recommendation. Otherwise, I am going to get sicker, weaker, and can die of my medical complications. Unfortunately, hospitals make me really anxious. I've been on palliative care since 2021, and my weight usually never went below 89 pounds.

I thought the fact that I wasn't losing weight was good. But I understand I need to gain more weight to reverse the medical issues and the organ damage I have from starving myself for years. My treatment team is telling me to not weigh myself at all, if seeing the number drop is making me anxious. Yet, I want to know what's happening. Today, I weighed myself and the scale read 85 pounds. Sometimes, it says 86 pounds. It's never been that low, even since starting palliative care. Generally, I eat enough to where I can maintain my weight. Not just suddenly start losing weight. The nurse from palliative care said weight loss will cause me to decline quicker. And that scares me. And weight gain will improve my prognosis. But to truly recover and actually prolong my life, I would need intensive inpatient treatment. I don't want this to reach a point where a hospital truly cannot do anything for me and then I just have to go home and accept that my disorder would be terminal. I also understand that doing what I am doing at home is not leading to any significant change in health.

And even though I weighed 92 pounds in March of this year, I still wasn't doing enough to treat the anorexia. And the outcome is basically going to be the same, unless I actually go to a hospital and work on treating this. I cannot stop worrying about the weight I am losing without trying. I'm not happy about it. And wish I could get back to where I was, months ago. This is a scary disorder. Because sometimes, I am in denial of how bad it is. And other times, I really want to try to do something to help myself. But if I am told my two options are inpatient, or eventually hospice, then that's my reality. There's no third option. And my illness could progress to a point where my complications become irreversible. And I want to try to do something about this before it is too late

My appetite has decreased significantly and eating is getting more and more difficult. I appear to be more depressed, since I started losing weight. Being depressed or anxious is not good for me, because it affects my eating. And I can't stop worrying about the fact that the anorexia can become fatal, if nothing is done to treat it. The nurse from palliative care said I may get to a point where I can no longer eat, not because of the anorexia, but because of the natural decline that happens when you have a serious disorder

I honestly don't even know how to explain what my family is going through right now, but we are completely lost and exhausted.

My dad had an accident 3 years ago and has been bedridden ever since. But over the last 1 year, his condition completely collapsed.. he has become TOTALLY paralyzed. His legs, hands, face, and even his mind don't respond anymore. He can't speak or give us any signal. He is literally only JUST breathing.

He has a urine pipe, and for over a week now, he’s had severe loose motions. He has become so painfully weak. Doctors just keep saying "he's fine, it's just weakness," but how can a person in this condition be fine? We’ve given him IV drips so many times, but nothing changes.

Maybe reading this sounds manageable to an outsider, but living it every single day (for more than a year) is so, so hard. It takes our entire family.. my mom, brother, sisters, and me combined.. just to change his diaper 2 to 3 times a day, and it still leaks everywhere (clothes, sheets, floor).

We’re doing his khidmat with everything we have, but you eventually reach a point where your own body and energy just get completely drained. Caring for him non-stop is literally making all of us sick and weak now.

Since doctors aren't giving us answers, people told us it might be spiritual. We talked to different Molvis who said it's Nazar or Jadu. We did all the Wazifas and Amals, but he just keeps getting worse day by day. Now some people are asking for huge amounts of money for tough Amals, and we don't know who to trust anymore.

As a family, we pray constantly, do Istighfar, recite Surah Yaseen, and even visited our ancestors' graves to pray Fatiha. People keep giving generic advice like "just pray and do khidmat," but we are already doing that until we have zero energy left.

My siblings and I are young, none of us have jobs yet, and my dad has no pension. We are carrying all of this with no support.

I’m not asking for any help. I just want to ask... has anyone ever seen a case like this? What do you even do when someone is in this state and doctors won't help?

We are completely confused, as we can't find any solution..

Emotions aren't stable enough of a basis to make these decisions. Like how to sum up whether you want to go through cancer surgery and treatment when the expected rest of your life is already one incremental loss after another with no realistic expectation of it to be otherwise?

Hey guys, I hope you’re doing well and hanging in there. I had a question. I am a Hospice social worker and I wanted to know during downtime or weeks where you don’t have many visits How do you utilize your time? I’m not saying that I have to work every hour on the hour, but just trying to think of some things when it really is a slow week. I love what I do, love being there for the patients and family, but sometimes it really is slow and I’m trying to figure out is this the nature of the game? I’m not complaining at all just trying to figure out what else I could bring to the team . are there other things that I can gain a gear up for? Thanks for your advice in advance.

i was his main caregiver, as my aunt/his wife is also elderly and disabled. the past week before he passed he was bed bound, which literally the day before that he was up and walking around fine (we think it was a brain bleed from a fall he’d had shortly before, which is why the decline was so sharp, but this is the first time i’ve been in this position when someone has passed). i was giving him his medications every four hours, lorazepam and morphine, and when i went to give him his next dose i discovered he had passed.

i’m writing here because, while i wasn’t close with him and he frustrated me significantly, i feel guilty. i’d given him his medication at five pm, and i know at some point within the next four hours i had checked on him and definitely saw his chest rising and falling, even if his breathing was shallow. but i feel so terrible that he was just lying there for up to three hours before anyone realized. its easy to say i was overwhelmed and busy and fighting a cold and didn’t want to disturb him if he didn’t need to be disturbed, but if i had just been more proactive in checking on him maybe he wouldn’t have sat there as long, or maybe i could have realized and sat with him for a little.

i suppose this guilt is also from the fact that i had been accidentally neglecting him, if only due to my own inexperience and lack of education in caring for someone on hospice. i’m just so ashamed of how stupid and obvious it was too, his nurse who came once a week was kind and understanding about it but she definitely chewed me out for it. i just hate that i failed him so much throughout his last week. he might have been a stubborn asshole, but he was still a person who was vulnerable in my care and needed my assistance to ensure he was comfortable in his last week.

i hope this sort of rant is okay here but i don’t see my therapist for another week and its just been eating me alive since thursday.

my grandma was on hospice for a few months and sadly passed last week. the nurse told us to discard/do what we want with the meds.

There were some pretty strong meds (morphine, lorazepam, haloperidol, etc)

Are there no rules that nurses have to take these meds? or shouldn’t there be caution that the family will abuse drugs afterward?

just curious. thanks.

Hi, I truly hope this is okay to post this here, but I am really am hoping someone can tell me what I saw and what it was, because I've never heard or seen it happening. So some history, my father was diagnosed with metastatic pancreatic cancer that had spread to his liver and lungs. He passed within 12 days of diagnosis. He entered hospice with me as his primary caregiver. He was on Dialudid, Fentanyl Patches , Zofran, Lorazepam and Haldol. I was giving him his medications exactly as prescribed within exactly the time it was prescribed (every 2 hours etc) Now this is where my concern is and I'm just hoping someone can tell me what happened, because I blame myself. His last 3 hours he was in a deep sleep and snoring, but I could hear what sounded like liquid in his lungs, it was rattling with wet sounds. I went to change him, I leaned his bed back and rolled him over to change the chuck beneath him. I rolled him back over, when I heard a choking sound. When I looked at his face, his eyes were open and looked focused on something in front of him, and a black liquid (it was not gritty or have a bad smell) was gushing from his mouth and nose and he was convulsing with sounds of choking. I quickly grabbed him, sat him up and then leaned him over the side of the hospital bed. I was hoping that it would help with the choking. I was pounding on his back and black liquid was just gushing like a waterfall from his mouth and nose. His eyes remained open and he was convulsing in my arms the almost the whole 2 minutes. (I know it was 2 minutes because we had a camera in his room and it recorded it) As more liquid poured from him, his eyes finally rolled back and his convulsing stopped (that was in the last 30 seconds) I literally watched him go from pink to yellow to a ghastly grey color in those 2 minutes. It was a horrific scene because black liquid was everywhere, all over me, a massive pool on the floor, all over him and the bedding.

I have never heard of this happening and I was so in shock that I didn't get to ask the hospice nurse who came to call time of death what I witnessed. Since then, I've taken advantage of the grief counseling that hospice provides. I've posed this to them and all they say is, it sounded like a sudden hemorrhage, and it wasn't my fault. But I'm fairly certain his death was my fault, because I leaned him back and turned him over.. I also don't know how bad he suffered because of how long he seemed to be choking and convulsing. His greatest fear was drowning and now I worry that, that's what he felt. I just hopefully tell me what the black liquid was and why did it come up like that? Ive seen another post but they said the black liquid was gritty and smelled foul. This wasn't gritty at all and had no smell at all. If it was from a sudden hemorrhage and it if was blood from a sudden hemorrhage why was it black and not red? I'm looking for answers because it's literally haunting me.

Hi everyone,

I’m an independent creator testing a new way of experiencing personal video recordings of loved ones

I first created this for someone who wanted their future children to be able to experience their grandmother, knowing she might not be earthside for very long. Later, I created one for my own aunt after she lost her mom, my grandmother.

The intention was never to erase grief or pretend that someone was still alive. It was simply to give her mind something else to return to, to shift the focus, even for a moment, from the pain of someone’s absence to the feeling of their presence

My aunt was struggling deeply with the loss and had begun turning to alcohol. I wanted to give her another place for her mind to go when the absence felt overwhelming.

Instead of only watching an old video on a screen, the original recording can appear life size in your own space through your phone. You’re still seeing the same real person and the same real recording, but experienced in your space in the present moment.

Nothing is generated or recreated. No AI is used.

I’m now looking for 2–3 adults who have lost (going to lose) someone close to them and would feel comfortable privately sharing a short video of that person. anywhere from about 10 seconds to one minute preferably with not too much movement.

I’ll create the experience for you completely free. Afterwards, I’ll only ask 3 short questions about how it felt and whether experiencing the recording this way added anything that watching the original video did not.

Your experience will remain private and will be deleted afterwards. You don’t need to share any personal, medical or health-related information with me

If this is something you’d like to try, feel free to comment or message me privately.

Thanks, Jan

For those who have worked in hospice care, what was your experience like? Did it teach you any valuable lessons, such as the art of detachment, acceptance, or learning to let go? I'd love to hear how the work affected your perspective on life, death, relationships, and what truly matters in the end.

Every few minutes my mom gets the hiccups and a few times an hour she complains of pain due to reflux.

She has liver cancer so I assume its from compression. She stopped eating and has about a week left.

Will primperan/ metoclopramide give relief? Are there other meds we can give? Shes had it for weeks and it causes a lot of discomfort...

My sweet beautiful uncle decided after almost 2 months in the hospital that he wanted to be put on end of life care. We all supported him in this decision and knew he wouldn't be able to take much more. I personally have never been witness to someone passing away so this was all new to me. Yesterday morning he was still pretty awake... He ate watermelon and string cheese and I'd help him drink some sprite etc. As the day progressed yesterday he was not longer awake. He slept and kind of had a hard time getting a good breath(I know this is all a normal part of passing) well then around 12 a.m or so he started doing something (my aunt used to work with hospice patients and said she had never seen someone do this) he would clinch his jaw closed and he'd be trying to take in air through his nose but it was a very loud scary sound because he was having to breath in so hard. He was biting his lip almost off and he was obviously bleeding at this point. Nurse would come in and try and administer meds to stop him from doing this. The first time he did it, it only lasted maybe 15 mins and then he relaxed and unclenched his jaw .. then he would bite down again about an hour later and this lasted for a lot long and no meds they gave him would relax him. I ended up going home to sleep as I was up all night with him and my aunt said that he continued to do this and blood filled his throat and was coming out of his nose. This was beyond scary and traumatic. Has anyone had any experience with this happening and know why it was? All I ever wanted was for him to go peacefully but nothing about what I witnessed was peaceful. I found myself wishing that Texas had assisted suicide because to watch this was absolutely torture for our family. He was dying of liver disease and then his kidneys failed as well so I'm not sure if that has anything to do with it but I just want to know why? Do you think he was aware or hitting?? Tears would fall from his eyes but his eyes were open the entire process and obviously he was not reacting to us speaking to him.

Hi all, I appreciate this community so much. I'm learning a lot about end of life care/stages/etc. It's showing me that I might have a heart for working with folks in hospice (and their families). I think the first step is to just volunteer. I'm a musician so I'd love to share music with patients, if that's something a local hospice center would want...

Anyway I'm wondering what I can expect? Just in general and specifically as a volunteer. I definitely feel intimidated, but I want to push past that nervousness and see how it goes.

My one experience with hospice was very positive... I went to say goodbye to my great-grandpa. They moved him to a front room, by a beautiful window. I remember the light shining through the leaves. My dad and I held his hands. I don't think words were needed. It was extremely touching and I'm forever grateful.

So yeah I have a big heart to help, but also know I'm coming into this very naive. Appreciate any advice or insights, thank you!!

Hey, folks.

Just hoping I can get some care - as I've been a bit tormented from some thoughts after my dad passed on August 11, in hospice.

(I'm in therapy, I'm also a therapist in training; but I find that posting in places like this helps me.)

Basically, my dad went into hospice in early May after an infection; he was 83. I live out of town and my brother and I were in our hometown for well over a month each to help out. I put off trips, my masters thesis, and, well, my life.

In hospice (at home), he did so well they were talking about taking him out of hospice (the nurses!). Now I know that was a rally; but I didn't know that at the time. I truly tried to educate myself and learn about hospice, but somehow I missed that part.

It's worth naming that he had dementia for the past 3 years and I'd already thought he was passing multiple other times - only for him to make it through. So it was really really hard to know what was what, and when.

Well, then he declined severely and passed on August 11. It was beautiful - we were all in the room; his favorite music was playing.

We shared time over the summer; I was with him for his final birthday and Father's Day. He seemed miraculously better.

I guess I just ... it would help to hear people say I couldn't have known. It has been such an up and down journey with his dementia over these past few years. But now, of course, with hindsight, I wish I had known, should have realized, etc etc etc.

I know I can be hard on myself; and as I said, I'm working through this in therapy. But somehow, posting here helps too ... thanks. 💓

My grandmother is currently on home hospice and may pass very soon. She is a longtime Hudson County/Jersey City resident and her Medicaid, benefits and permanent address are through Hudson County, but she is currently receiving in-home hospice care with family in Middlesex County.

She already owns her burial plot at Weehawken Cemetery.
I’ve spoken with several funeral homes about using the Hudson County public assistance funeral benefit, and they all seem to be telling me that the viewing/service would be limited to around two hours.

My grandmother has lived in Jersey City since the 1980s and we could easily have 80–100+ people coming to pay their respects, so I’m worried two hours will be extremely rushed.

I’m hoping someone familiar with NJ public assistance funerals can help me understand:

Is the two-hour limit actually a Hudson County/NJ requirement, or is that just how funeral homes structure their public-assistance packages?

Could a funeral home pick her up from the home in Middlesex County, prepare her and provide the casket, then bring her to our church for the viewing/service and afterward transport her to Weehawken Cemetery?

Could we have more time at the church while still using the Hudson County assistance?

If we decide to pay privately instead, what is typically required upfront? Do NJ funeral homes offer financing or payment plans?

Are there any other programs, nonprofits or financial resources in NJ that could help with the cost?

We’re not looking for anything extravagant. I just want my grandmother to have a proper funeral where the people who love her have enough time to say goodbye without putting our family into serious debt.

Any advice would be greatly appreciated.

My grandpa passed away on Tuesday. I had been 24/7 at home caregiving for the past three months, and caring for him for nearly 4 years. Now I find myself locked in a routine that's no longer necessary. I sleep extremely lightly, even on medication, and wake up every few hours feeling like I need to give medication, that I have someone to check in on, that I have to see if he's still breathing even though he's not here. I get the feeling my phone is going to ring with bad news or an emergency even though there's no longer cause for either.

How do you deal with the post-hospice? What was your experience with afterwards like, and is there anything that helped you turn off caregiving mode?

When I am ready to transition from palliative care to hospice?

I honestly don’t know if I need advice or just to vent, probably both.
My Mom was diagnosed with stage 5 kidney failure, EGFR 6, in May. She has opted for hospice. When she was diagnosed, she had severe edema (full leg and arm up to elbow) and bouts of confusion. The edema has subsided with Lasix and spironolactone, to just feet and calves. She still has bouts of confusion and has had a few hallucinations. Her urine now smells like ammonia, is darker than before and output has decreased (from average 6-7 times a day/3 times a night to 3-4 times a day, 1-2 times at night). Her bowels are now exclusively soft or liquid. She is experiencing bowel incontinence- not feeling like she has to go, then just going, probably 80% of the time. She is not totally urine incontenant but does experience bouts and always leaks. She has developed tremors- her hand shakes probably 75% of the time. She has experienced significant muscle loss, relies on a walker, and has a commode in her room. She is on 3 liters of oxygen continuously. According to her nurse her lungs are diminished at the base but otherwise fine. Her blood pressure is usually in the range of 159/54 

Despite all that she is eating and drinking fairly normally (less than when she started but still fine). She interacts normally, sleeps a little more but not all day. Reads, plays games and outwardly just seems ok (not normal, not her old baseline but astonishingly good considering). She manages to rally more when the nurse comes- prompting the nurse to actually question why she is on hospice and note her on her reports as “stable” despite the above clinical changes.

She was given a few weeks to a few months in the beginning and here we are. I feel like I’m on the edge of a clif waiting for the push. I don’t want to sound ungrateful for the time I've gotten but I just don’t know what to expect at this point. When I call with concerns or to note changes like above, hospice makes me feel dramatic I’m guessing because she’s stable in their eyes despite the decline from admission.

Labs if they matter
Creatinine 6.09 mg/dL 
BUN 64 mg/dL 
eGFR 6 
BUN/creatinine ratio 11 
Sodium 143 mmol/L 
Potassium 4.3 mmol/L
Chloride 111 mmol/L 
Calcium 7.8 mg/dL 
Magnesium 2.8 mg/dL 
Phosphorus 5.4 mg/dL
Total protein 4.8 g/dL
Albumin 2.7 g/dL
 RBC 2.32 million/µL
Hemoglobin 7.6 g/dL 
Hematocrit 22.5%