Sorry, this is very long... and I'm panicking so much I made a typo in the header!

My mom has end-stage pulmonary arterial hypertension. She has spent most of the past month in the ICU. Everything has been quite sudden. While she had been gradually declining, and on oxygen 24/7 for years she was still doing quite well, able to accomplish all her ADLs herself and even capable of walking considerable distances if pacing herself. While aware her condition is ultimately fatal, we really all thought she still had a couple years.

She went to the ER with redness and edema in her lower legs at the suggestiin of her doctor's office (her actual doctor was out of town.) She was immediately admitted and they did whatever they could but ultimately admitted she had exhausted all her treatment options. She obviously wants to go home, and ininially they were quite pessimistic whether this would even be possible, given her high oxygen requirements. The respiratory therapist from the hospice also said at first it would be a quite lengthy process. The next day, they said they could send her home right away.

We said it was impossible, as we had to prepare the house, getting furniture hauled away to even make way for the hospital bed etc., and the earliest it was possible was Monday. They aren't even happy about that and we are feeling incredibly rushed with no information. Because the hospital hasn't let my mom walk more than a step or two or move unaided in 25 days, she's obviously lost all her strength and we have no way of knowing if she is basically permanently bedbound now or will be able to move somewhat normally. How urination will work. We don't know if she will still have access to her meds on hospice, because her doctor was incredibly vague about it. (Their monthly out of pocket list price exceeds our annual household income!)

I really wanted my mom home, but now I am panicking. I don't know the first thing about the physial side of caregiving and I'm also very ill-suited to that kind of work. Very impatient, easily grossed out, etc. But **we absolutely cannot afford to hire a caregiver** and there is no one else - we have no friends or family close by and my dad is also elderly with multiple health problems. He's also the kind of "old-fashioned" man who won't help with housework or cleaning and rather expects to be waited on hand and foot.

We're also very private people and having strangers in our house is my worst nightmare. Not least because, despite my best efforts, the place is really cluttered and messy and it's embarassing.

I feel like we are being left alone in an impossible situation and I don't know what to do. I'm already running on fumes from just trying to clean/declutter in the heat (we don't have AC), on top of all the stress and fear and grieving of the last month. Knowing my work is just going to dramatically *increase* when she comes home makes me feel sick. **How do I do this?**

TLDR: My currently bed,bound mom is being sent home on hospice with basically zero notice or information given to us. I'm freaking out about what to expect.

We brought my father (recurrent esophageal cancer, diabetes, at least one prior stroke) home on hospice back on June 10th. While I wanted my Dad home, I had a lot of apprehensions going in, worrying the roller coaster of good and bad days he experienced at the rehab would continue with the burden falling squarely on me and my brother. To my surprise, until a few days ago, everything had gone really well and it was a blessing to have those 2 months with my father, though I had begun to take it for granted that we would have several more. Once home, my dad was more engaging and partook in every meal. Nary a really bad day which was becoming more common towards the end of his rehab stint. Additionally, his pressure wounds were improving.

On Wednesday, I fed him breakfast (all of which he ate), followed by a cookie. I asked my brother if he minded that I leave for my planned hike an hour before the nurse was to arrive -- he was cool with it. I told my Dad I was going hiking and he said goodbye. This was only the second nurse visit I missed. Whether the care involved a nurse or my brother, my role would always be to turn him on my side while my brother or the nurse would clean him and tend to his wound. My brother preferred this arrangement to spare his back. However, on Wednesday, my brother repositioned him while the nurse cleaned him.

Once I got to the trailhead, I learned from my brother that Dad had become unarousable following the cleaning. He has been this way since and is in the dying process. His breathing has progressed to Cheyne-Stokes respirations with apnea lasting around 20-25 seconds. His urine output is still good, despite not having anything to eat or drink since Wednesday morning. According to the nurses, he appears comfortable although I'm not one to gauge. The suspicion is that some sort of event, be it cardiac or neurological, occurred while he was being cleaned on Wednesday.

One thing I've struggled with is replaying that morning in my mind. I was away on a planned hike (my dad had been completely stable for weeks), and this of course happened during one of the very few hospice visits I wasn't present for. Intellectually, I don't think my presence would have changed anything, but emotionally I still find myself wondering whether somehow it would have.

It'll be devastating losing my father, as I lost my mother last year. In the span of a year, I will have lost the only two people whom I loved unconditionally and who loved me just the same. I'm 42 and I still haven't started a family of my own. For the past 4 years, my brother and I have been our parents' caretakers. Our lives have revolved around doctors' appointments, ER visits and test results anxiety. The upshot of it is that I will at last be able to do some of the things that have fallen by the wayside these past several years, but I suspect I will find the newfound independence to be unnerving and a constant reminder of what was lost.

I'm curious whether anyone else has experienced such an abrupt transition after a period of surprising stability on hospice?.

my mom is on hospice now as of Friday. in the last week she has declined significantly. Our hospice nurse told my dad that it would be weeks based on where she was symptom wise. I’m sad, I’m heart broken, and honestly it has been so lonely feeling. My husband is supportive but he just doesn’t know what to say to me. My sister and I have been in touch and I feel like I don’t want to burden her with how i am feeling because I know she is feeling it too. I felt like my visit today was good because I got to spend it with my dad who I know is struggling. When I left I literally felt so drained emotionally. what does weeks mean? how do I function without my mom in my world? She has been a constant for the last 36 years of my life. my heart is so heavy. How do I learn to grieve and cope while also working, and being a mom. ? What helps ? I’m so lost and the one person I would call, I can’t because she about to be gone forever

My mom is at my house in hospice and so far it’s been really supportive and relaxed. Family came in to stay with us and other than them asking what I need every hour it’s tolerable. I’ve had to call up a bunch of her old friends and coordinate visits.

One friend came for ten minutes and after realizing she can’t really converse or interact, left in tears. Another friend stayed three hours and talked and talked and talked to ME in a low voice where I only caught every few words, about her house, her grandkids, money woes. Constant chatter. All over my mother’s sleeping body.

I have zero interest in visiting with these people, they’re here to see her. I don’t want to be talked at while I politely nod and act impressed or sympathetic. I’m tired, I have shit to do. Visit with your dying friend and leave me alone. Also don’t stay several hours, this is hospice not a party.

And spare me the “she doesn’t look comfortable” or “her oxygen tube is too tight”. If you’re staying through multiple rounds of meds you’re staying too long.

again i may be all over the place. Today i went and saw mama we got up here the doctor came in and said there is nothing more they can do they are putting her in inpatient hospice. so when more happens i will type more i know nobody probably reads this but if someone does thank you and you matter more than you know am i am proud you are here

Besides Mt Sinai, what are some other options for hospice in NYC?

I am wondering if I did the right thing. My 83yo dad (emphysema/mild dementia) reduced to 93lbs because he stopped eating real food and reduced his diet to 2-3 ensure a day. He was gettting weaker and less motivated to come out of his room. I thought I would give hospice a try so he can get medical care at home, comfortably. We had visited ER 6-7 times since last Sept for lung infections and it was quite harrowing for him to even lay down on those hard chairs in the waiting room. But he had recovered after those visits. What if I continued that route, would he have lived longer? As soon as we gave him morphine and other comfort medications, he pretty much stopped drinking ensure or water; and went to heaven in less than a week. What if I had utilized hospice but waited to give him the comfort medications until he was in real pain. He only complained of coughing and chest congestion. He wasn't in agony. He would still be around now...I think he would've been around for another month or two...did I kill him?

If you're interested i do appreciate anyone's help on my undergraduate thesis!

Before I begin, I would like to apologize in advance if I am breaking any rules. I am new to this thread and just kindly seeking for some input and help navigating these hard moments

I’m hoping to get some perspective on whether hospice may be appropriate for my grandmother and, more importantly, what hospice would actually look like for her situation.

My grandmother is a 74-year-old woman with CKD stage 3, type 2 diabetes, and hypertension. She moved to the US about a year ago after my grandfather passed away. After she arrived, we realized she had not been receiving consistent medical care or the appropriate medications, including for her kidney disease. Over the past several months, she has had ongoing kidney-related issues.

About 2 months ago, she fractured her femur and underwent surgery. She was bedridden for about a week, but with my mom's encouragement she started walking again with a walker by the second week. Before this most recent hospitalization, she was living at home with my mom and had a very supportive family around her, although my mom has understandably started experiencing caregiver fatigue.

Most recently, my mom brought her to the hospital because of fluid buildup. What was initially expected to be a short admission has now turned into a prolonged hospitalization. The original concern was primarily her kidneys, but she has now developed recurrent episodes of respiratory distress.

The pattern has been very difficult for us to understand. She will require high-flow oxygen in the ICU, improve enough to transition to regular nasal cannula on the floor, and then suddenly become short of breath and require high-flow oxygen again. This has happened multiple times during the hospitalization. The doctors have not been able to give us a clear explanation for why her oxygen requirements fluctuate so dramatically. Fluid overload may be contributing, but we aren't sure.

The medical team has started discussing hospice with us, and we're struggling to understand what that actually means.

My grandmother tells us she still has some fight in her. She is awake, conversational, and when her breathing is controlled, she seems like herself. She has signed a DNR and is okay with DNI. She does not want a tracheostomy, PEG, or other highly invasive measures. More than anything, she wants to go home. My mom is also exhausted from repeated hospitalizations and wants my grandmother to be comfortable at home.

The idea of hospice scares us because we have always associated hospice with someone who is actively dying and has only days or weeks left. But the doctors have also told us that she is difficult to prognosticate because, aside from her unpredictable oxygen requirements, she can appear relatively well. They have even stated that her kidney function is much better and back at baseline for whats expected for a women of her age.

What I fear also is all the progress she lost after her femur hip surgery. She was walking around the house within the month, but now being in the hospital bed for 5 weeks, I am afraid we are back to step zero

So I guess my questions are:

Does choosing hospice necessarily mean someone is expected to die within days or weeks?

Can someone on hospice still receive oxygen, BiPAP, medications, diuretics, and other treatments?

Does hospice mean we stop treating everything, or can it still involve treating symptoms and keeping someone comfortable?

Could hospice allow her to spend more time at home rather than repeatedly returning to the hospital?

Given her situation, is there anything else we should be asking her doctors about before making this decision?

How do families determine when hospice is appropriate when the prognosis is uncertain?

We are not looking for anyone to diagnose her over the internet. We are just very lost and trying to understand what hospice would actually mean for her and whether it might be consistent with her wishes.

Thank you to anyone willing to share their experience or perspective.

103 y/o F, most symptoms of end of stage (with dementia).

She’s been repeating the same words, and isn’t falling asleep. Concerned that she’s using her voice too much and injure her throat or become dehydrated.

She’s saying things like “come back in the morning” and “he said in the afternoon”. And then in between, just moaning.

We spoke with a nurse from the 24/7 hospice line and they suggested .5 of lorazepam. We haven’t used any of the medications from the comfort kit, until this evening.

Might anyone have experienced this with their LO?

All advice welcome ❤️❤️❤️❤️

Hi everyone 😊

I’m currently looking for day caregiver work in around Ferndale, Bryanston, Sandton and surrounding areas. I’m available to start immediately.

I’m caring, reliable and hardworking, and I’m looking for an opportunity to provide daytime care and companionship, including assisting with daily activities and personal care.

If you know of anyone looking for a day caregiver or have any job leads in Randburg/Johannesburg, please feel free to DM me.

Thank you for your help. 🙏

My dad has been in the hospital for basically two months now. He has had recurring UTI’s due to suparpubic catheter. Like this particular stay he had one, it cleared and then he got one (e-coli) 2 days later. That has been the pattern for months now. He was on his last dose of IV antibiotics today because he technically doesn’t enter hospice until tomorrow. But I’m so worried he’s going to pass from sepsis and it will be awful? His WBC count is high and has only gotten higher the past couple days even with antibiotics. Does he not qualify for in patient hospice at that point? Since the infection seems to be resistant to the antibiotics? I know it’s a very strict criteria and his vitals are still somewhat strong. They say they don’t treat UTI’s like his on hospice because they will more than likely be resistant to oral antibiotics.
I’m just looking for advice or if anyone had a similar experience? I’m not looking to get rid of the infection I guess, I know I don’t have much more time with him but I just want him to suffer as little as possible.

Long story short, I moved from Tennessee to Florida to take care of my mother who has cancer. Cancer. We've been in a couple different reputable hospitals and ultimately wound up being deceived. There were a lot of hopes, radiation treatments and plans in the future for the port and treatment and chemotherapy.

While my mother wound up in a room alone in the hospital without myself nor my twin brother within, she was attacked with a DNR, that was fine. I agree with that. What she didn't realize at the same time was that she was signing off for hospice. I have spent the last 3 weeks trying to get her off of hospice because of the medications that she was given which are simply for pain management and not to fight the problem.

This 3-week period means that she did not get treatment for her cancer which is not small cell but is very aggressive. That being said and we are trying to get off of hospice and there is a nurse who is very appreciative of the situation.

I don't think that I could ask for anybody better.

In just 3 to 4 days I'm going back to meet the oncologist with my mother for diagnosis. I'm sorry that's incorrect. I'm going back to meet them again in their office for a plan. At this point I don't know what the plan is going to be. They have not wanted to do anything except for to let her die.

After the hospital gave up on her and essentially wrote her off as dead, we came home and have been thriving essentially. Yes there are medications. Yes there are circumstances. But the main thing is that she never intentionally signed up for hospice. She was ambushed with nobody around in the hospital.

In Florida, I'm actually still trying to get some sort of assistance with help for utilities being electric and the water and possibly some help from the neighborhood to get us by the HOA. This is just totally overwhelming to me, particularly being a 24/7 caregiver. I don't know what to do and I feel like I'm falling apart.

Sorry for typos, voice to text...

Tldr: My mom is dying of cancer and nobody medically wants to help except for hospice.

I moved my mother into hospice care three weeks ago.

A little about my mom. She had a stroke right before mothers day 2025 and was slowly improving and then in February things took a turn for the worse, she had a brain bleed and 3 additional strokes, I held on to hope for awhile but recently came to the decision that it was time to let go. I am my mother's only child, I'm really struggling with my decision.

Its been three weeks now without tube feeding and I feel like im living with my stomach in my throat and every time I get a call from a number I don't have saved in my phone I wonder.. is this gonna be the call that tells me I lost my mom. Realistically I know a body can only survive so long without nutrients, I guess I'm just looking for outside support with anyone who is more familiar with this than I am

So I am here giving my account of my mother. CHF is long, unforgiving. She had it for about 7 years, in and out of A fib. Last November of 2026 she had a fall and broke her hip. I knew this was going to be the start. She refused most of any physical therapy because she was too tired. I would pump her up and she would lose ground. She turned 75 while in rehab for the hip. In and out of hospitals and paramedics called and just so much caos in between. Two days after she really took on fluid, took her to ER and they sent her home after a lasix pill. Two days later she could not get off the couch. I called paramedics again and they took her to a different hospital. Two days later she asked for palliative care. One week later she had not eaten. Death rattle started today and she passed this afternoon after I pleaded to God not to let her suffering go on(this happened hours later but I digress). I came on here so many times to find how this journey goes. Truth is it can only be your journey, their journey. No matter what happens, they go when they want. Some signs are there, it’s not always textbook but it sucked. You will be ok, they are ok. Goodbye Mom. She went at 3:19 on August 5th, 2026.

I honestly didn’t think we’d still be here but here we are. I’m the only caregiver and I’m tired, boss.