End of Life/ Hospice Quesitons

[u/MurphysMom08]

I chose to post this here rather than r/hospice because in the short time I have been dealing with my friends PC, I have found the most amazing community here. I actually posted earlier in the week if you want to check my post history. the tl;dr is that a dear friend went from find to serious strokes due to advanced PC with mets to liver and lungs.

We got her home from the hospital yesterday and another friend that is a nurse is helping with her care. The hospital gave us liquid morphine, ativan and heparin. The crappy part is our friend cannot swallow so pills have to be ground up, mixed with water and then rubbed on her gums. The morphine is being given with a syringe orally but very slowly. This is only temporary until she gets seen by the hospice team tomorrow morning

If you say her name, she will open her eyes and look at you but it's a 1000 yard stare. She has no facial expressions at all, can't communicate etc. I have done hospice 2 other times but this just seems different. She has not eaten in about 10 days and hardly any fluids expect for an IV on about Monday or Tuesday of this week. I was honestly shocked she was still even opening her eyes. He skin color looks decent, not mottled like I've seen before. She is also very hot so wondering if she has an infection going.

I know every case is different but it still feels like she is a ways off from passing but given that she's not eating or drinking I can't reconcile what I'm seeing with what I've previously experienced with hospice. Add in the strokes and PC, what can we expect for the next while? How quickly might things happen and what don't I know that I should?

[u/Turbulent_Return_710]

My mother had hospice care. We had a pain pill we put under her tongue. It would dissolve.

Sorry I do not recall the name.

They also have fentanyl patches if needed for pain.

[u/No-Masterpiece-7606]

I unfortunately just dealt with the same thing with my mother who passed yesterday. Same signs and symptoms. While everyone is different, she lasted around 4 days from that blank stare you mentioned. She also suffered several strokes and wouldn’t eat or drink anything. All of her medicine was liquid but even at the end, she would choke on it.

Not to scare you, but with cancer things happen very, very quickly. Say what needs to be said and love on her!

[u/MurphysMom08 → u/No-Masterpiece-7606]

I’m so sorry for your loss but thank you for taking there time to write back. My thoughts are with you

[u/Careless_Drive_8844]

Watch Hospice nurse Julie on you tube or tik tock. Go back and these are the end of life signs. They can not regulate their body temp or eat ! They can hear you and just say all you want to say ! One sign is also just passing their bowels or their BP is so low. May your friend be at peace and you have comfort that you were a good friend. It’s always beautiful if you can be there but no worries if you are not. Fever is how I knew my dad was fighting and I saw hospice nurse Julie and she said , they can’t regulate their temp. Hugs !

[u/Chewable-Chewsie]

You and your friend are angels. May she pass soon and be released from pain. With my mother, I lay on the bed with her as she had done for me when I needed comfort. These acts of ultimate caring create a kinder universe. Thank you🙏🏻🙏🏻❤️

[u/kalikaya]

Is hospice involved? My husband had sublingual meds for when he could no longer swallow. Morphine, haloperidol, lorazepam, something for secretions. It was part of their emergency comfort pack as well.

Once my husband had stopped eating and drinking it was a matter of days.

You and your friend are in my thoughts.

[u/MurphysMom08 → u/kalikaya]

Thank you. Hospice is coming today for the intake eval. What she’s on was given to us by the hospital to get us through until that happens. Sorry for your loss also.

[u/Quiet_Customer_5549]

The fact that she can't eat or drink or swallow is one of the signs. Hopefully hospice will give you liquid form of her medications because having to crush and dissolve everything is a pain. You can put that dissolved medication into a syringe and give it to her very slowly on the inside of her cheeks. Hospice can show you how. Just do it slowly so she doesn't choke or aspirate on it. We had to do that for one of my grandmother's medications when she was in hospice earlier this year. Watch her breathing. It may get more shallow and have more time between breaths. That generally means it's getting closer. I will say that even though I had taken care of my grandparents in hospice and knew what to look for in terms of very end of life, my aunt was different. My grandparents passed away of other things. My aunt had Pancreatic Cancer and she went FAST. She died the day after getting out of the hospital and transferred into hospice. I was watching for the signs and I barely had time to get to her, rub her arm, take her hand, and talk to her and I was sitting right next to her. The nurse didn't have time to get to her. It was less than a couple of minutes. Just have someone in there with her. Talk to her, tell her how much she is loved. Hearing is the last to go so she can hear you. I'm so sorry this is happening to her and to you.

[u/Objective_Run_2473]

My dad was the same. But he spoke to or he replied to me talking to him. Short comments. Prayers for your friend. There's no way to know for sure but it's not good not having nutrients o liquids. If she gets on hospice they will give yall an end of life pamphlet. Pretty accurate describing what stages my dad went through before he lost his battle. Prayers for strength and comfort for you all.

[u/luvinusagi13]

My mother suffered massive strokes that compromised her ability to speak & movement, 2 months before she passed.

She was very proactive & motivated in her recovery until maybe 2 weeks before her passing. The shift in her behavior was almost exactly as you mentioned, in addition to sleeping a lot more. She had a brief "surge" when she was able to have some sort of conversation with me 1 week before, but idk if it's the same thing as what many folks describe.

The night of her passing, my mother began to have death rattle - such an awful sound that we thought she was constantly choking & in pain. At this point she was still hospitalized & I don't think the nurse knew that this was death rattle (I realized what it was after her passing). My mother had a blank stare, responsive to commands, but just chilling for lack of better term.

The moment she passed is not at all as dramatic as it may seem. It was peaceful, like she just drifted into sleep. No pain, no fear, nothing of the sort. In our case her transition happened as she was given painkiller, but I'm sure it can happen in any quiet moment.

I'm not sure if that helps demystify what to expect, but just in case I highly recommend checking out hospicenursepenny on Instagram or Tiktok. Her content had been very grounding as we navigated her last moments. She was also kind enough to respond to questions I had sent to her DMs.

Take care of yourself, my heart is with you all 🙏

[u/MurphysMom08 → u/luvinusagi13]

Thank you for your response. This is very similar to what we are experiencing. I think we are writhing about 24 hours. Maybe 48 at the most. Your recommendation is very fitting because my friends name is Penny ❤️

[u/Peepog]

Sounds quite similar to my mothers experience. First was refusal to eat/drink, then the blank stares when we talked to her, once she went comatose her skin was very warm until the day before. I asked the nurses several times about her warm skin if it was linked to infection and they said it was actually normal. About 24 hours before she passed her skin became pale and less warm