r/hospice

My dad has pancreatic cancer and is nearing the end and declining fast. He’s stopped being able to swallow and his in-patient hospice has now ended food and water. Up until recently he’s been the sweetest patient, smiling and full of gratitude even as his body falls apart. But now he’s really looking like he’s suffering. He seems to still be able to hear us and can make tiny coherent facial movements to acknowledge what we’re saying to him and we have small moments of connection but speech is too difficult.

I went into his room today to talk to him and sing and connect but instead all of a sudden he looks at me intensely with pained and wild eyes and he said “THIRSTY. THIRSTY. THIRSTY.” It took tremendous effort to ask for water. We swabbed him and he clamps down around the swab and wouldn’t release it for a while, which must have been hard for him. It was so heartbreaking. The nurse tried to offer thickened water but he just doesn’t have the mouth strength to get it down.

I do not buy that when patients stop being able to drink that their bodies no longer want water. He’s desperate. This is hell watching him suffer like this and I wish we could just put a damn water IV on him to help him out but it’s against protocol.

I feel like a monster being part of a support team that can’t offer this comfort. His body was processing water perfectly well until his swallowing went south. Kidneys are great. He was drinking a ton on his own. I’m freaking out.

Hi, everyone. I, 46f, take care of my brother, 44m. He's a lifelong cancer survivor, stroke, bedridden, quadriplegic, nonverbal, total self-care deficit, respiratory issues, feeding tube and so on.

When will I know to take this step? When will it be the time? What markers am I looking for? And have I missed them?

Any guidance or advice is welcome, thank you.

I just wanted to say thank you to the hospice nurses here. My aunt is currently passing away on hospice, today will likely be her final day. This has been a very difficult time for my family especially my mom who’s been staying with her. The hospice nurse she has is one of the most compassionate people I could hope for and I am so grateful for that.

Thank you all for what you do. The impact you have on the families and the patients is far more than you may realize.

Back in 2018, I was a single mom of four kids. My dad lived alone in Magna, Utah, in the house that had once belonged to my great-grandparents. After they passed away, he stayed there and became, in a way, the caretaker of the old family home.

I went down there often to visit him, mow his lawn, help with things around the house, and just spend time with him.

One afternoon, I noticed he didn't look well.

Then he asked me something that immediately worried me.

“Is it normal to have blood in your stool?”

I told him no, absolutely not, and that he needed to see a doctor. My dad was incredibly stubborn when it came to things like that, so I offered to help him make the appointment.

A few weeks later, he finally went in and had tests done.

He was very reluctant to tell us the results. Eventually, I helped him log into his medical account, and I saw for myself just how sick he was.

My dad had lived a hard life. He had been an alcoholic and a smoker for most of it. He'd also worked for a mining company for 39 years. In 2013, they laid him off, and after that, it seemed like something inside him changed. He had spent so much of his life working that being forced into retirement seemed to take a piece of him.

Now he was dying.

He refused cancer treatment. At first, he didn't want hospice either. But his health declined incredibly fast.

His stomach began filling with fluid and became severely swollen. Nurses came to the house and taught my sisters and me how to drain the fluid into a bag. We took turns caring for him—helping him to the bathroom, bathing him, making sure he ate, giving him medication when he would accept it, and simply sitting with him.

It was horrible watching someone you love deteriorate so quickly.

But there were beautiful moments mixed in with the awful ones.

Sometimes I would bring all four of my kids with me, and we'd stay overnight. The kids would sleep in the living room while I took care of Grandpa.

My son Tyler was just learning to play guitar, and he'd sit and play for my dad. The kids would tell him jokes and stories and try to make him laugh.

I could see how much it brightened his days.

My dad was only sick for about four months after his diagnosis.

And toward the end, something happened that I still can't explain.

It was sometime around October.

The kids and I were staying at Dad's house that night. They were asleep in the living room, but I couldn't sleep.

By then, my dad was barely eating or drinking anything.

About once an hour, I'd hear his weak voice call from his bedroom:

“Cocoa.”

That meant he wanted chocolate milk. At that point, it was practically the only thing he would consume.

So I'd get up, make him a small cup, take it to him, make sure he was comfortable, and try to rest again.

That night I was exhausted, but restless.

My kids were spread out in the living room, finally asleep. I laid down nearby, trying to force myself to rest. And then I felt it: a light tap on my shoulder. Soft, but clear, and right next to my ear, a small voice, 'Mom.' I jolted, turned over expecting one of the kids, but nobody was there. I lost a daughter at birth about 5 years prior and my mind directly thought about her at that moment. That was when the restlessness really set in. I got up, wandered to the kitchen with that nagging feeling under my skin, and eventually the hallway, where everything else happened

The house was almost completely dark. The only light on was the small kitchen light above the sink.

I remember getting up from my make shift bed and standing in the kitchen.

Just off the kitchen was a hallway. My dad's bedroom was down that hallway. Across from his room was the bathroom, with the TV room nearby.

Then I caught movement out of the corner of my eye.

I looked over.

It was my dad.

I watched him move quickly down the hallway toward the bathroom.

He was naked, which actually wasn't unusual by then. Near the end, clothing had become uncomfortable and difficult for him, so he usually stayed covered with a sheet or blanket.

But what scared me was that he was walking by himself.

He couldn't do that anymore.

I saw him grab the wall for support and hurry toward the bathroom.

My heart dropped.

“Dad! No! Let me help you!”

I rushed after him because I was terrified he was going to fall.

I reached the bathroom.

It was empty.

I stopped.

Then I turned and looked across the hallway into my dad's bedroom.

He was lying in bed.

Asleep.

I just stood there.

I looked back into the empty bathroom.

Then back at my dad.

He hadn't moved.

I couldn't understand what I was seeing.

I hadn't just seen a vague shadow. I hadn't heard a noise and assumed it was him.

I had seen a figure that looked exactly like my dad move across that hallway.

I saw his body.

I saw him grab the wall.

I was so certain it was him that I yelled at him and ran after him because I thought he was going to fall.

And yet there he was.

Still in bed.

For a while afterward, I kept asking myself the same question:

Who did I just see?

A few days later, one of the nurses came to the house.

I decided to tell her what had happened.

I expected her to say I was exhausted. Maybe that stress and lack of sleep had gotten to me.

Instead, she didn't seem surprised at all.

She told me that as people get closer to death, sometimes strange things begin happening around them—things their families can't always explain.

Then she said something that has stayed with me ever since.

She told me that some people believe that, near death, the veil between this world and whatever comes next begins to thin.

And she gently told me that my dad might be getting ready to leave.

I thought those words would scare me.

Instead, they brought me comfort.

My dad passed away not long afterward.

Years have passed, but I still think about that night.

I know I was exhausted. I know I was under tremendous stress. I was watching my father die, barely sleeping, and taking care of four kids at the same time.

Maybe there's a completely ordinary explanation for what happened.

But I also know what I saw.

For those few seconds, there wasn't a doubt in my mind.

I saw my dad walking down that hallway.

Sometimes I wonder whether what I witnessed wasn't a haunting at all.

Maybe some part of him was already beginning to leave.

Maybe the nurse was right.

Maybe, for just a moment that night, the veil really did become thin enough for me to see through it.

I still don't know what I saw that night. I know I was exhausted. I know stress and grief do strange things to your mind. But I also know that I saw my dad. Not a shadow, not a trick of light. I saw him move down that hallway, saw him grab the wall, saw him with my own eyes, and then he was still in bed. I can't say what it was. But sometimes I think maybe it wasn't a haunting or something creepy at all. Maybe it was just my dad, already halfway between here and whatever comes next.

Hi all - I just found this page and am grateful. My mom is on hospice at home, and we have certainly learned that the dying process seems peaceful for her but is so hard for us to watch.

Three days ago my mom on hospice declined - today is day 3.5 without food or water. She’s on morphine and Ativan and yesterday we had to start haldol because she was having these large jerking movements that were scaring her.

Yesterday she could half respond to things, she knew when they dog got on the bed and said ‘get down,’ and when we rolled her to the side she’s still responding and concerned (which has been the trend since she became bed bound at the start of hospice).

Last night, breathing out was a very scary groan and hospice advised it was likely secretions and to try to prop her up on one side - that did help. This morning breathing in is a deep snore, out is a groan sometimes but she does have light hiccups. She really has lost the ability to close her mouth as well. She’s very comfortable, not distressed.

Her urine output previously was very dark, that has ended and the brief has a mostly-clear fluid that smells horrific but it’s not in a big amount.

Yesterday hospice stated that they thought she was right on the edge of late transition to actively dying - no molting on her legs but her hands and feet are very cold even with a little heater running.

We are doing our best to be there for her, also give her space, and ensure she is comfortable with meds, chapstick, eye drops and mouth swabs.

I’m the type of person who needs to have things scheduled and the hardest part is the unknown timeline. One hospice nurse said within the week, another said it “didn’t seem like days” and I would just love you alls opinions. Her precious history was dementia, and then she suffered a stroke that was three brain bleeds.

Friday my mom went back to the hospital she was on a downturn and they wanted to see if her glioblastoma was worsening. Well she had Covid but the brain is now way worse with spreading and larger tumor. They suggested hospice begins soon so we started it yesterday in the hospital. They are trying to coordinate to have hospice set back up in her old assisted living apartment but that was yesterday morning when she would still barely reply to nurses and she was still taking sips of fluids. In the evening she started having labored breathing, they gave her some morphine for the breathing and she really has been asleep nonstop since then. Now I just don’t see how she lasts more than a few days. She doesn’t respond to me, she isn’t eating or drinking, she is having labored breathing. Isn’t the “comfort” more important for the patient to not have to deal with another transportation to her old apartment? Should I ask the doctors to submit to insurance a new request to just stay here in the hospital? She has her own Covid room and I’ve been sleeping on the cot. It is nice and comfortable and I like how they still are doing the iv Keppra and dexamethasone to prevent any seizures and swelling. They wouldn’t do that in the asssited living hospice.

TW: traumatic death

My mom had been dealing with stage 4 colon cancer for 2 years. She had gotten to the point of being bed bound and needing help with all care. However she hadn't been admitted to hospice yet. She was still in a hospital. We found out yesterday she had mets to her spine and she decided she wanted radiation treatment to slow any more progessiin there. She was sleeping more but was coherent and seemed fine over all.

I was with her around 730 last night and thought everything was fine. We brought her some food that she ate, we talked abd visited. I got a call at 930 that she was experiencing significantly more pain and they had to administer extra pain killers and eventually a sedative as she was still hollering in pain. Once the sedative was administered she was completely unresponsive. They told me death was imminent. I rushed to the hospital only to receive a call on my way there, that she was gone. When I got there the nurse told me she ran to call me that we needed to get there, and then she went back to my mom and she had passed.

Im not sure why the nurse felt the need to elaborate on the fact that she was in so much pain she was yelling for help, the man (another patient) in the room with her was also calling for help on her behalf. Even after pain meds, the nurse told her if its not better in 20 mins let her know and we will give more and she continued to moan in pain, which is when she administered the 2nd pain killer and sedative. She was not in a good way. My mom is not one to complain if shes hurting so this must have been significant. The nurse did says she was calm when she passed which isn't helping me because all I can think about is how distraught she would have been before becoming unconsious. Her last moments were her screaming in pain alone... i also feel absolutely awful for the man sharing a room with her. I cannot imagine the sounds ingrained in his brain.

I dont know how to cope with this...

My father with stage 4 NSCLC is declining. Brain mets returned heavily after gamma knife in May. He had a pretty bad seizure wed pm and is still in hospital on fluids and steroids. He cannot fully speak or walk. We’re transporting him home on Monday and beginning hospice care. How long do we think he has with no fluids and food? They will make him comfortable but he’s not passing the swallow test and not seemingly reviving from wed nights episode. He’s awake in no pain just unable to use his motor skills fully bc of position of tumors near brain stem. This all is so terrible. He’s only 67 😭

​I'm stuck and need help on these two items, can anyone offer some guidance? He was at a different skilled care facility that didnt treat him well which destroyed his kidney and the toxins caused a severe mental decline. He was rehospitalized and then sent to a different facility but with his current condition insurance cut off skilled care for his room and we have switched to hospice.

​His living will says no artificial nutrition long-term, but he currently has a tube going into his stomach feeding him liquid nutrition—should this be stopped now that he is transitioning to hospice? I get that it would speed things up but I'm stuck if long term means more like if he was in a coma. They did stop his dialysis for kidney failure so i dont know if I should stop this as well.

​As the skilled care insurance was cut off it is a $15,000/month private pay bill (though he does have the funds to last over a year there if needed). I'm trying to decide if it's better to keep him here or move him given his kidney failure and severe mental decline. Recently he has had combative behavior (he choked a nurse, though they now have him on different meds) will impact our ability to transfer him.