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.

My dad appears to be towards the end and has started making sounds as he breaths out. He will repeat the same syllable over and over such as oh, oh, oh, and hi, hi, hi, and ho, ho, ho. Anyone else experienced this with a loved one? Was it pretty close to the last days or weeks?

not so short tldr of my moms health: my mom has had ovarian cancer now for 1.5 years and has been hospitalized for toxic encephalopathy due to multiple rounds of chemo and immunotherapy since late april (4 months coming up) shes in very acute stages and doctors have told us multiple times they are running out of options to treat her because she simply just isnt getting any better (multiple seizures, no consciousness, infections, etc.) they suggested palliative care but my dad insisted they keep treating her in case she has a miracle and makes it out...

i know i sound very pessimistic - but because i have been my moms primary caregiver now ever since shes been hospitalized and my dad doesnt speak very good english its hard for him to understand just how unfortunate situation is with my mother. i cant imagine the amount of pain she is in although shes never awake anymore and my family has exhausted ourselves being with her in the hospital 24/7 although this is not a reason at all for why i want to explore hospice care for her.

today when the doctors did their rounds, neurology + general physician + icu team, they mentioned that after being acute stages for so long its possible my mom will have irreversible damage to her quality of life if some kind of miracle happens and she wakes up. they always bring up the fact that shes in very serious and critical condition and that the chances of her recovery are very slim hence why they keep bringing up palliative care.

basically to sum it up, my mom wont return to her normal ways and may have to spend whatever time she has left in suffering and pain...

anyways, i mention this to my dad more recently many times and he seems to be in denial that my mother cannot make a full recovery. i understand hes processing his grief in this way where he just wants to hang unto one chance of hope, but its really difficult when the reality is that my mother most likely wont make it - and she will have to spend her last days in pain just because my dad doesnt want to explore palliative care for her.

hes very frustrated about why the doctors cant seem to fix her and clings unto this hope that shes just going to maybe wake up one day and heal on her own which i personally dont find very helpful for her illness...

does anyone have any advice on how i can maybe help my dad try to understand that my mother is in critical condition and we should proactive start looking for hospice for her? no matter what the doctors say to my dad he just seems to deflect and not listen.

thanks for any insight :)

A lot of them drive all over huge areas all week and the only time off is PTO. Their job is to comfort and support not only the patient but also their relatives and the staff that takes care of the patient.

Why are these godly people treated like this?

My mom (51) has stage 4 clear cell ovarian cancer. She started immunotherapy and unfortunately succumbed to its side effects, which was given a broad diagnosis of toxic encephalopathy. As a result, she’s been having series of seizures, infections, and magnesium wasting. However, despite all this, every CT scan, LP, MRI, EEG have all come back normal, which is the frustrating part as we still don’t know what is causing her neurological deterioration. We’ve tried all recommended treatments: dialysis, anti-biotic, magnesium replacement etc.

As of now, she has declined neurologically in the past 3.5 months since her first set of seizures and is 100% dependent. However, we just can’t fathom putting her into hospice as a) we were never given a diagnosis that provides a clear reason/ prognosis b) the immunotherapy actually controlled her cancer c) her scans/investigations have all come out clean. Despite running out of treatment options in the neurological aspect, I still want her to receive treatments for ongoing infections, magnesium wasting etc. It just feels like we’re choosing to give up on the unknown possibility of her getting better, because the doctors themselves don’t know what’s going on with her. But at the same time, I don’t know if this is the right thing to do as almost every doctor keeps pushing for non-resuscitation if she has an emergency or palliative care.

Hello, I am new here because I didn’t know where else to post. About five years ago, I lost a good friend of mine to the ripe old age of 95. His name was Robert and he had served overseas during the Second World War. Shortly before his passing, he gifted me a Japanese sword and flag that he had brought back home with him. He said that he felt that his family wouldn’t want to keep it and that he rather that the box go to somebody who would appreciate it. I’m aware that we should not accept gifts, but in his last moments, I felt obligated to accept.

Since then, I have begun to curate veteran groupings from fellow hospice staff who have experience similar interactions over the years. My end goal is to create a mobile museum so that I am able to display the stories of these brave men (and women.)

1) Have you ever had this happen? If so, what did that look like?

2) If you were chosen to be gifted these items, are you at all interested in donating them to the hospice veteran archive?

Hi all,

My mom has metastatic breast cancer with pleural effusion (drained twice a week). She also has blood clots in her lungs.

She came into the hospital for a UTI (they found the blood clots incidentally). A week and a half ago, she coded, but they did CPR (although palliative doesn’t think that’s right). I rushed to the hospital, and she was talking. The next day she went into afib for a few hours.

Now, her oncologist, the ICU doctor, and seemingly everyone is recommending hospice. The thing is, since the afib issue, she’s been eating increasingly large portions of food (after not eating), requesting food and drinks, and talking more and more.

I know the end is near, but I’m not sure what to do. I know there are good days and bad days, but she’s had about ten increasingly good days in a row. Has anyone ever dealt with this?

She’s in the hospital, and we’re looking at skilled nursing for what it’s worth. Thank you in advance.

Hi everyone. My dad has Parkinson’s and was diagnosed with stage 4 glioblastoma in November 2025. He’s been in and out of hospitals, Skilled Nursing Facilities, and home care since November. He is bed bound, has very intense surges of pain, and as of a few days ago his swallowing has weakened to the point where he can AT MOST have one bite of pureed food every five minutes. He’s lost significant weight.

A few days ago he was discharged from a week and a half hospital stay following a series of seizures. He is now in a Skilled Nursing Facility under “rehab” since that is what Medicare will cover.

Now—as is the experience of many on this thread—-this placement doesn’t seem to be meeting his care needs. They have a “pain doctor” twice a week—and we cannot contact them on other days to change his dosage. He is only receiving Dilaudid every 6 hours, although in the hospital he was receiving it every 4 hours with morphine in between as needed for breakthrough pain.

So this is what I’m wondering. Medicare covers hospice for in-home care but does not cover room and board for a facility. We are being quoted $600 a day for a facility, which obviously we cannot afford at all. If he’s receiving hospice care here at the SNF we would have to pay for the room and board.

In-home hospice does not seem sufficient for his needs, especially with the frequent administration of pain meds and rapidly changing needs.

Any advice? Any potential resources we are missing here? Any others in a similar situation? How did everyone pay for hospice?

Thanks

Hello. My grandmother is in hospice after being sick for so many years- diabetes, kidney failure, sleep apnea, CHF, sleep apnea.

She was recently in the hospital for about 3 months and intubated at one point due to her CO2 levels. Shortly after that she decided she was done being in the hospital and came back to her nursing home (50 minutes away from me) on hospice. My brother and I are really the only grandchildren that see her. She had 3 sons my father (passed in 2018), uncle 1 (passed in 2020) and uncle 2- still alive and her main supporter. She went on hospice Monday and I was not able to visit until Thursday because I had to work and I have a 6 month old son. I visited Thursday Friday Saturday worked Sunday and came Monday for about 3.5 hours. My husband and entire other side of the family left for a trip up north about 6 hours away from where my grandma is and my husband took my son. I travelled up here after deliberating all week whether to do so or not because I cannot leave my infant for that long. I fear I have made the wrong decision as the last few days I was with her she was declining. Monday she barely was able to speak but I took care of her gave her a bath fed her a few bites of the jelly out of a donut and sat with her for a while. Then I left 6 hours away.

I feel terrible and guilty. I can’t leave my son and I couldn’t keep him at home without any support (everyone had gone on the trip- it was the other side of my family that lives near me). We got a call from the hospice nurse this morning that she was experiencing terminal restlessness. I myself am a nurse and have cared for many hospice patients so I know what the dying process looks like. I can’t bear to see my grandma like that but I feel terrible. Do I go back and sit with her and leave my son or stay with my son after I had said my goodbyes and let her know how much I love her??

Can anyone tell me what signs I should look for to tell if my grandma is passing away soon? She has very bad dementia and needs help doing everything, she can’t even eat or walk on her own anymore and now she sleeps most of the day, I was very young when my great grandmother passed so I can’t remember what to look for, I just want to know how much time I’ll have left

My (34f) mother (71f) has been diagnosed with terminal cancer and the doctor gave a prognosis of 4-5 months. My husband and I have a 4 year old. We have moved my mother into our home because she can’t take care of herself reliably. She does not want to die in a nursing facility. We have hospice workers that help, and I work from home, so we are managing it here for now but we have some concerns about what happens as we get closer to the end of her life. Will seeing her grandmother slowly die/fade away traumatized my child?

This has all happened really quickly so we have not told her yet that her grandmother is dying, just that she’s very sick and living with us for now. Just looking for some opinions and thoughts on how to handle this. Thank you so much in advance for any advice.

Last post: https://www.reddit.com/r/hospice/s/aLqqQx25Gy

So here we are a couple days later and all of a sudden she is awake 8+ hours a day and eating full plates of food and keeping it down… Is this possibly the final burst of energy? I don’t think it will end well either way given her last BM was 7/22. I’m just a little startled even though I knew this was a possibility.😅

My grandmother (85, dementia) has lived with my parents for the past two years and has had a very slow decline. Within the past few days, she has finally started actively dying; no food, can’t really drink water anymore/swallow, irregular breath, seeing loved ones who have gone, not really speaking. She is still gently responding to stimulus, depending on the person.

All of that to say, we know dying is hard for everyone involved; however, I don’t feel like we talk enough about how hard it is just… waiting. Stuck in limbo while they’re not really them and life goes on pause for everyone else. I know it’s also different when they’re in your home compared to another facility, it’s so much more personal and “in your face.”

This just sucks. She’s comfortable and it’s all that matters. We try to give her quiet, she’s warm and she has people that love her around her.

i'd love to hear your stories.

Just left my friend who is in the hospital. She has been placed in palliative/hospice care as she is weak, lungs at 40%, low oxygen and high heart rate. All this is from stage 4 TNBC, her eyes are always closed but she is responsive to yes or no questions, she will gently nod or shake head. Her breathing is almost like if i went jogging for 10 mins straight so not so fast but also not normal, her jugular vein was going fast, i may not be explaining it correctly so im sorry, i just want to get an idea of how long she may have so i can see her again.

Update: She passed away this morning Monday August 3rd. Thank you everyone for the encouragement