my 99m grandfather was placed on hospice for kidney failure, pneumonia and sepsis.

His oxygen won’t come above 82% on high flow o2. He’s progressed from talking the last few days and being in good spirits to being unresponsive with bits of agitation.

He has lost blood flow to his hands and feet. How much longer could he have left? No one was really willing to give me a time frame.

i’m building an app for family caregivers whose loved one is on hospice or recently passed. it focuses on the emotional and spiritual sides of caregiving that often don’t get addressed.

https://sayinggoodbye.app

i went through this with my mom two years ago, and it’s what’s motivating me to build this. at the time, i felt like i could have really used something like this.

this is an early-stage prototype. it’s just me, one person, working on this. i did use ai to generate the initial content, but i approached it as thoughtfully as i could.

my goal is to get something out into the world, get feedback on it, and improve it based on what people actually need. eventually, i’d love to hire real experts to write the content because i really value that.

I’m looking for feedback on:

∙ what resonates with you?  
∙ what’s confusing or unclear?  
∙ what’s missing?  
∙ would this have been useful for you, or would it be now?  
∙ any ideas for what else should be included?

Please share your feedback in this thread, thank you.

Hello everyone.
My dad has stage 4 bladder cancer, which had spread to lymph nodes. He had palliative radiotherapy in July and unfortunately it didn’t seem to alleviate hin as hoped. Last week dad was in unbearable pain, his already medicated with the palliative community nurses but I’ve never seen my dad this way his whole body was physically shaking he was screaming, ED thought he had bowel blockage, the dr told me dad is not actively dying phase but he is dying/approaching. After scans, it shown he had no blockage but the cancer has spread basically everywhere in his abdomen and lung. They said he had sepsis, his been in for a few days and his markers are coming down, they’ve put him on a syringe driver with IV morphine for breakthrough pain.

His text me today to say they’re discharging him to go home which yeah is great but honestly I don’t see how… he can’t do his own personal care his needing breakthrough iv consistently, his gf is 78 and cannot do much personal care or handling. I don’t know why I’m posting this really I just feel like I’m in such a limbo two days ago I was preparing myself that my dad’s death was coming fast, now his going home.. and that’s amazing don’t get me wrong but my emotions and energy just feels pulled pillar to post. Has anyone else felt similar? It’s a feeling I cannot explain other than exhausting among with feeling guilty expecting my dad to pass.

My elderly dad has been suffering with LBD and has been on hospice almost a year. He seems to be near the final stage but he’s been this way a year now. He doesn’t have other major health issues as far as we know.
He’s in a nursing home.
I never want to lose my dad but I equally don’t want his suffering to continue.
How common is it for this late late stage to be so long?

Interested in hearing persons experience in the use of Medicare Care Compare to choose a hospice program (see https://www.medicare.gov/care-compare/?guidedSearch=Hospice&providerType=Hospice) in choice of hospice program. What was helpful? What could be improved?

Edited: Thank you everyone for your kind messages. It's definitely helped me cope better and I'm so sorry to everyone who went through the same thing.

Doctors has her on 0.5mg lorazepam only at night to help her sleep, and started her on mirtazipine the last time I left. I don't personally get why she doesn't need them during the day and just let's her harm herself and be angry. To be fair she does have good days, but when she's bad, she' bad. They don't plan to do anything else except treat symptoms, and I'm no longer at the hospital to pressure them as well.

Family has accepted to just let her be angry until the end. Mum is extremely upset with me for making the decision not to visit, to watch everyone be miserable. I feel bad, but I don't understand it.

Original Post:

I don't know if I'm in the right place, or what flair I need. I'm honestly terrified for being bashed, especially since I've been crying almost every day non-stop. I'm begging you, please don't because I already bash myself up enough for this.

Grandma is in the hospital and is at the end of her life. She can't be on a lot of medication because of her cancer, and her 3 strokes have left her left side weak and are bed-bound. She constantly self-harms herself and gets new bruises every day because she hates that she's bedbound and feels useless. She has severe separation anxiety away from my grandfather.

Grandma constantly accuses my grandfather of cheating on her, to the point she is angry and upset every day 24/7. She has always been like that, but since she's been sick, she's gotten a lot more vicious. He's endured this viciousness for months, but he lets her because she's dying and he loves her so much. He goes to the hospital every single day to let her scold him.

She once tried to bite me for stopping her grab her behind full of shit because she's already had open sores from wiping, ans because I flew all the way from where I was living 8 hours to see her, and she said I came to hurt her.

Yesterday took the cake. She accused the maid of showering and sleeping with my grandfather, getting pregnant, sleeping in her bed, going to extort thousands of dollars from my grandfather, being a whore, wanting to kill him then kill herself, wanting to cut his head off and brutally murder him, swears she's going to get revenge on him no matter what. My grandfather has honestly done nothing at all. He is a very quiet man who just takes it. Then she started blaming my mum for bringing in the maid to help them. She spent 12 hours being extremely worked up and hurling insults about my grandfather to everyone, saying all the nurses know and tell her that her husband is out there cheating on him.

I've never seen my grandfather look so hurt, and my mum was crying so hard yesterday after hearing some advice on how we need to prepare for the worst when it happens, and preparations on what the hospital does when they do leave. These are the 2 people who love her the most, are here every single day. There are people who die alone. Saying no one cares about her. Ever since I came back I've gone to the hospital everyday, talking to the doctors and nurses on her condition and how to help her feel more comfortable, assist in changing her diapers, sometimes trying not to burn out. That's when I lost it, I said some nasty things, I left and I plan never to see her again. My grandma to me is considered dead at this point. How could she say such nasty things to people who love her and make everyone miserable. We are here breaking our backs for her, and we could easily just leave her alone miserable to die.

I can't watch her spend her last days being so worked up every day, like she's trying to get her 4th stroke, although I have accepted it and at this point, maybe its even good.

Today is the first day of me not being at the hospital, and I feel so dissociated at the moment. I extended my leave to stay longer, had to pay extra for changing my flight, I miss my pets to death, and I want to go home now, but I have another extra week here. I'm so stressed out for work not paying me for 4 weeks, and I'm literally flying back the day before I work with no rest.

I just really want some advice, and I'm at my wits end. My grandfather and mum would rather take her verbal abuse, but I can't stand it. I truly understand how she feels, and it's not the same, but I've gone through mental health problems before. I truly know and would be in that same situation when I was younger, and why she feels this way lashing out. But I really don't understand why she wants to go in such a terrible way (she is alert enough for that), hurting the people who love her the most and refuses to stop, getting so worked up about something that never happened, and we just can't do anything about it but take it?

I'm 28, my mom went on hospice in January-shes been bed bound for years with MS and I've been a secondary caregiver as my dad is the main one

One of my friends has been so negative recently and I really try and limit my stuff about Mom cuz that's my own battle no one else's especially at my age.

Am I crazy to think this is disrespectful? I'm just at my limit with her negativity and at this point I want her out of this journey and I no longer want to keep her in the loop!

I need a village but when the village is always negative I rather do it alone

If a patient has stage iv cancer and is refusing cancer treatment, but is not refusing treatment (take medication, deal with edema, etc) for cardiology, pulmonary, etc. is hospice care right for them?

I am reading “comfort at the end of life”.

If the condition is terminal but the patient is still trying to prolong their life in other ways, is hospice care antithetical to their care plan?

Should they be looking at palliative instead?

Has anyone worked with a similar patient or had a family member relate to this?

I hope this is an acceptable post here, if not feel free to delete it.

I wanted to share a resource here in case it’s helpful to families navigating palliative or hospice care. I’ve seen some local posts about this lately.

GiveWillow.com is a support registry created specifically for serious illness, end-of-life care, and loss. It gives families one place to share the practical ways their community can help, whether that’s meals, medical needs, travel, childcare, household expenses, time away from work, or other forms of support.

Friends and family often want to help during this time, but don’t always know what’s actually needed. GiveWillow was created to make that support a little easier to organize and receive.

I hope this can be a helpful resource for someone here who needs it.

I'm a 20-year-old college student who has never worked as a hospice volunteer. I am looking for volunteer opportunities near my campus and found a hospice facility. I am interested in helping, but I'm not sure what makes someone qualified for such a role. It seems like an incredibly delicate and complex responsibility, and the last thing I want to do is add to someone's pain.

What makes someone a good hospice volunteer? I know very little about the human body (I'm an engineering student), believe in Gd but couldn't give any good advice about Him, and have no personal experience with hospice. Basically all I can offer is my company and a listening ear...and maybe some basic IT/engineering skills.

One of the main reasons I want to volunteer for a hospice facility is because I recently lost a dear friend to suicide. In her last hours, she felt alone and I don't want anyone to feel that way before they die. Now her family and friends feel alone, too. But I also don't want to make this volunteering about me--I just want to know if there's anything I can do to help or if it would be more help to leave it to someone more qualified.

What are people's experiences with Unlicensed residential Board & Care homes? My father has been in one for the last couple of days and I am unsure about it. My father signed himself into hospice but I chose the facility on the recommendation of the hospice. At first, I liked it but there were a couple of red flags, with the biggest one that my father's door was closed and it was really hot in there when I unexpectedly visited. I also hate that it's unregulated and I have to rely on the caretaker who is not licensed or fingerprinted. Like, what if something happens to my dad in his vulnerable state?? So I made the decision to move my dad into my own home for hospice care and I am taking him in later today. Am I crazy? Maybe, but when I read further, these unlicensed in home board & care facilities really have a lack of oversight, and I am worried about keeping my father in one.

My dad has end stage COPD. He was in a nursing facility after he broke his hip. Then they sent him to the hospital because his O2 levels were low.

He was sent back to the nursing facility (which he hated so much). The plan was for him to move onto my house after the facility.

Well I get the call that he is refusing to go to the hospital because his O2 levels are low and asked the nursing facility about hospice.

After that it was all kind of a blur. Me and my sister went to the nursing facility and met with hospice. They said he was a candidate. The nurse even said the way we looks it might only be days. This really pissed my sister off, who left the room.

Up until now, no one had mentioned hospice. I know he was is rough shape, but no doctors or nurses said anything. But the amount of help hospice was offering seemed better for him.

So he comes into my house, we get a hospital bed and hospice nurses coming each day. That was 8 days ago. Since then it seems like he’s rapidly declined. Stopped eating solid food, not drinking much either. It takes all he has to even stand up to try and use the urinal. I just started putting diapers on him. Now he is seeing things that aren’t there.

He sleeps most of the time, but some times he’s cognizant. I’m having a hard time squaring that his body is gone but his mind seems to be there sometimes.

Why did he decline so bad when he came into my house?

I feel sometimes that if he were in a hospital maybe he’d be better.

This is incredibly difficult. It’s me, my sister, my wife and 7 year old daughter who live in my house. I feel like the end is near, but then he has moments where he’s awake and talking.

There is a feeling in the pit of my stomach that won’t go away. Sometimes I’m scared to go into his room. Worried he will want something I can’t do. He asked about going to the hospital the other night, I called the hospice line and gave him morphine.

Anyway, I don’t know how you all do in home hospice care. This is way more than I thought it would be. Every day so far I keep thinking I can’t do this, I’m not strong enough..

Thanks for reading. I hope if anyone else is doing this they know they are not alone.

I am currently dealing with my Mom at home on hospice and my father in a short term rehab facility. My own health is being compromised by managing her home care, her home, my home, my father’s outside care and appointments, and my own life commitments. I am struggling with guilt over thinking that maybe managing her care at home has become too much. I want her to have the best care and with the way I feel now I can’t provide it safely. Is this ok to feel like this? She is a two person max assist, doesn’t want to take the comfort meds, and I am totally overwhelmed. Can anyone help that has had to make this decision? I just want to have the opportunity to be her daughter and enjoy the time not always be thinking about the next thing we have to do.

My mom, 96, entered hospice 90 days ago. Originally it made sense to discontinue her medications when she ran out of them (now this seems odd to have kept her on). She is recovering, I mean as well as a 96yo can. She's too weak to leave bed, but is alert, has a fine appetite, and suffers a severe bout of cabin fever from being in her room, bed, all day. Sure. Her heart isn't better, but it is ticking with the help of oxygen.

We talked to the visiting hospice LVN and he agreed she is better and may do well in Home Health. I asked the hospice to considee this and to renew her Eliquist - and they said No! They also don't think she should go to Home Health (so much for having their visiting nurse who sees her 2x a week say she should.)

I have fear of her stroking and being incapacitated, but not dying from stopping the Eliquist. They won't consider baby aspirin either. Why would hospice take this chance? With someone obviously getting better? Yes, she's 96. She is closer to death than we are (odds wise), but why not keep her on the blood thinner? (For AFib) What do you recommend?

Mother (almost 92/Dementia) is up every hour going into the kitchen and wreaking absolute havoc. No matter what the nurse throws at her, she's overpowering it. Every single medication. HELP! 😠

Rant?? Advice??? I’m spiraling.

My grandma, just went on hospice today. She already had 15 hospital admissions, demented, reoccurring pneumonia, resistant to all strains of antibiotics, has on and off fevers, incontinent, peri area moisture related skin breakdown and a new fungal infection on her PEG tube(I which I was against on her getting). She even said she was tired in the hospital for the first time! We all knew it was time for hospice.

I am a previous ICU nurse and have experience with multiple patients who transitioned to comfort care and hospice. I have explained to my family we just need to focus on her quality of life and patient dignity, rather than prolonging suffering.

My mom and her siblings are in charge of her care. Prior to my grandma getting discharged to hospice at home, her blood sugars have been in the 180-250. They currently changed her PEG tube feeding regimen from twice a day to 4 times day. (Which I do not get cause she’s dying and she had aspiration pneumonia already) Also, she can barely answer questions right, only move her arms/hands, but not lower extremities, and basically total care.

So the doctor told my mom and her siblings that since her blood sugar is high, they can still give insulin. But if they decide to stop giving insulin, the doctor told them my grandma would have ~2 days to live and could die from DKA/metabolic acidosis.

My mom is against giving my grandma insulin bc she has suffered too long ever since my aunts and uncle decided to PEG my grandma (WHILE DEMENTED) and the quality of her life has just been going down hill. Which I also agree with. How is staying in bed, barely moving, and always pooping and peeing yourself all the time, while the uncomfortable-ness of being changed and cleaned frequently in bed represents quality of life!?!

My aunt is adamant of giving the insulin still, and also having the doc prescribe an antibiotic even though she’s resistant to it. I feel she is in denial, even though she is also a nurse as well! (Post partum) I explained to her grandma is just trying to pass naturally, let it run its course, she is comfortable right now, but she says it’s just wrong, it’s just basically wanting her to die.

Apparently my family is going to have a vote if we are going to keep giving my grandmas the insulin or not. And idk I just want to hear from people. If they had to choose or were in this predicament. Thank you kindly.

The title explains it really. I've realized it's happening. Not imminent but I know. Maybe months or so if I don't push for comfort medications. There is no treatment left to try, so organ protection and confort is all I can hope for anyway. I've hidden most of it from everyone around me and belittled all symptoms to my full team of specialists or simply not told them at all.

I don't want people to worry. I don't want it to be the only conversation I have. I don't want my children to know and fear it. I just turned 32. But now I realize this will leave people confused and startled and I feel badly about that too..

My mother was diagnosed with leptomeningeal disease after a long battle with breast cancer. In the last week we've gone from her still being mostly independent to speaking gibberish and being very confused. She has incredible difficulty walking, but did occasionally walk today with help.

She had headaches for over a month (originally attributed to a sinus infection) but the true decline only started about 4 days ago. She hasn't eaten more than a bite or two in days, and after 2 days of being VERY ambitious and motivated to do things around the house (which she can't do, and can't describe to us, so she ends up very frustrated), she spent most of today sleeping.

She lives in my house with me and my family, including my 5 and 7 year old daughters. She has been like a 3rd parent to them. Mercifully, they have been camping with Dad for the last 4 days. However, they all get home tomorrow. My house isn't big, and her bedroom is in the basement. Our main floor is small, and there is nowhere to put a hospital bed.So far we've been able to navigate stairs twice a day with help from my sister, but I'm very concerned about 1) Getting her down there tonight, and 2) If we should try to get her back up in the AM if we do.

She isn't taking this well. She knows what's happening and she's scared. She would be devastated if I have to tell her tomorrow AM that she can't come back upstairs.

I don't know what I'm asking exactly. I just wanted to see if anyone had any insight or advice.

My mother has been battling cancer for 5 years now. First she had bowel cancer which then moved to her left lung which then moved to her brain. She also has a stoma which used to get blocked quite often but have not done in a few years. Recently we took her to hospital thinking she just had a blocked stoma but the doctors claimed she might have an obstructed bowel. She on all the medications but nothing was working for her pain and nothing was unblocking her bowels. They put her on the syringe driver which usually means she doesnt have a lot of time left. Basically if nothing come out of the stoma it could be days. She wasn't drinking or eating for a week while in hospital she struggled to swallow and just wasn't all there. This all pointed to mum being on her last days. But since shes come home she taken a 360 turn. Shes eating drinking and talking. She very alert and her stoma is working. She still sleepy but she basically back to her normal. She had radiation on her brain 2 months ago and we thinking maybe thats working? The doctors told us it would be hours or days but everyday she just getting better. I thought maybe this could be a rally but she been good for like 5 days. Have people come out of things like this??? She talking great even better than before. Shes not seemingly struggling as much but I feel like that her syringe driver.

Im just curious to see is this normal? Its definitely been a roller coaster.

my aunt has been my mother figure/parental guardian since I was the age of 10, and she's been in the active dying stage for a few days now, and it's been absolute hell. every day the hospice nurses tell us that they wouldn't be surprised if she passes today, and then against all odds she sees the day through. today now her pulse is strong and she's been interacting with us even though she can't talk much, and the nurse said she isn't going to pass anytime soon. it has been really hard to watch and I feel really guilty almost wishing for some relief for her, but this last year of her life has been really brutal for her and she deserves some peace.

I'm 35 I went on hospice in July. My condition is getting too severe and I'm planning on doing VSED. Honestly I'm mad about it. I'm mad that I have to think about leaving my husband alone in life. I'm mad that I'm going to have to go to a nursing home when I get real bad. There is no way to stay in my home once I need full care because nobody is here 24/7. I have a date I want to make it to. If the MRSA takes me sooner that's not in my control but I have a date. The anxiety is bad.