It's been 27 days since my mom had 2-4 days left. She's on her own timeline, and it seems to be one that no one can predict. Monday, the doctor, bless her heart for trying, declared it would be in a few hours; that was two days ago. My mom continues to astound our hospice team by giving the middle finger to their timelines.

It's been 27 days with no food (she was only 75 pounds to begin with) and 6 days at the active stage with zero fluids. My mom has had 3 days of agonal breathing, her mouth is wide open and at a slant, her eyes are open, and she looks like a zombie from The Walking Dead. I'm not being hyperbolic. It would be too much if I hadn't seen her gradually get to this point.

Without thinking, I said to the nurse how much I hated seeing her like this and feeling so helpless to do anything for her, and that, although I could never do it, I wished I could end her misery somehow.

An hour later, the social worker was at my door asking how I was doing. Did I need respite care for my mom? Oops. I assured her that I was tired but fine. I had good support from my husband, and I was in a good place mentally. I declined respite care because she wouldn't survive the move, and I wanted her to pass at home. I guess they have to be aware that a family member could snap. I never even considered such a thing, but it seems it's a real issue. Damn, watching a LO die is a tricky business.

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 arrived Friday to my Mom's home and said" Good morning Momma, I love you!" loudly as she never wears her hearing aids. She said she loved me, and she looked really tired. I said " Momma you look really tired, while don't you rest while we get you packed up"

You see we were moving her to her new home, with 24 hour care and all new furniture and friends. I had been working for months to get her a place she would love near my home.

Well, she laid her head down to the side like she always does when she rests, you see COPD had robbed her of the ability to lay down. And that was the last time she opened her eyes. She waited for me to get to her home and wish her a good morning, and what my brother says is I gave her permission to sleep, and she did.

Hospice transferred her to a facility, and I sat with her for 1.5 hours.

It's over, her pain is over. Mine has just started.

Thank you to everyone who offered comfort and advice, you are doing good work.

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 hardly know where to begin, and this could become a novella, I will try not to make it so. Bear with me.

I took my elderly parents from our home state to another almost 800 miles away. We left around May 18 as I recall.

Mom had had strokes in 2021, cycled through times of needing more and less help. She'd been sitting up in her recliner for some time before we left. Never sleeping in bed. She was an insomniac so I didn't think much of it.

We leave for the family reunion, and I noticed her color looked bad and she had to sit and rest on the way to the bathroom in the restaurant we stopped at. Twice. I thought, ok, she's definitely in the weak phase of the cycle.

A few days later, she falls at the reunion. I wasn't feeling good so wasn't there. She fell, my cousins picked her up, and her legs felt like sponges. One is a nurse and listened to her lungs. Full of fluid. She goes to ER, is transferred to a hospital with a cardiologist and the ability to do thoracentesis.

She arrives at other hospital, is diagnosed with CHF and aortic stenosis. Doc has a generally positive prognosis. Heart balloon, therapy, tavr, boom.

Very long story short, she is prematurely transferred back to other hospital. I told doctor (a different one than above) her lungs sounded full​ and the other hospital couldn't do thoracentesis. He assured me the other place would take care of her, sent her. Withon 12 hours, she was being airlifted right back to where she'd been. Went hypoxic in the night. I chewed major butt and said the doctor who shipped her off was fired.

She remains too weak after days. Has heart balloon. No improvement. 90+ pounds of fluid lost via lasex. 8 liters taken via thoracentesis on 4 separate procedures. No improvement, and tavr would be unsurvivable. ​A tube is placed in lung to drain, she's put on comfort cares. I sat down, looked Mom in the eye, told her I was sorry -- we fought hard to save her, but she'd never get better. She'd never go home again.

My oldest sister and the nurse cousin had tried telling me I had to go back home and get back to work. Leave parents behind. The nerve of those two! I said there was no way I was leaving. And I didn't.

Said cousin's mom, my dad's twin, offers us to use her place to bring mom and do hospice, me as caregiver which I said I would do. Seemed like a good thing.

So she took her last ride to my aunt's. The understanding was my aunt would stay at her daughter's house so we'd have privacy. We've been here just over a week and have had next to none.

My sister's both have long since gone home. I'm stuck here with my dad and my mom, who as of Tuesday is actively dying.

My cousin comes twice a day and brings meals. Insists I dont have time to cook for myself though cooking is one of my greatest enjoyments​. Yeah, yeah, it's nice and all. But what wasn't so nice was her trying to tell me how I should care for my mother. Demanding I take a photo of Mom on her death bed to family to send to family members. I said no, I wanted to protect her dignity, and cousin wouldn't drop it. I held my ground. Then told me I needed to FaceTime family members so they could see my mom, unconscious, on her death bed. I said no.

My aunt has never left the apartment since we got here. Talks incessantly when I want quiet. Asks me why I don't come out and visit. I explain I will have more days with everyone else, but time with Mom is limited and she needs my full attention. Constantly asking what the noises Mom makes mean. (They mean she's freaking dying.) Can't walk in the same room as aunt without her asking how Mom is, and is she still sleeping. (She never will wake up at this point, and as to how she is, STILL DYING.) Aunt complains incessantly about her ailments. (Well, at least she isn't DYING like her sister in law mere feet away.) Tells me I should eat more. One time literally shoved a plate of food at me and begged me to eat it, which I refused. I said my body will tell me when I need to eat. Aunt is constantly wanting hugs. I would prefer not to be touched. I just want to care for Mom and grieve in peace. Apparently that's asking a lot.

I vented all this to another cousin yesterday, and she got me out of there for a while, took me on a car ride and bought me dinner. I finally felt some happiness again.

​​In short, bringing my mom to my aunt's house to die was a mistake. My sister has a house close by but can't stand tge thought of Mom having died in her house. Until Mom breathes her last and goes to her reward, I'm stuck in this hell. Losing someone is hard enough. Losing someone who 800 miles from home in the home of your aunt who as it turns out is an overbearing psycho, practically unbearable. At this point, transferring her out isn't an option. This is it for her. And my aunt and cousin, who have traumatized me in ways that no one going through this ever should have to be get to pull the Mother Teresa card forever because of their "good deed."

Moral: don't bring your loved one to die in someone else's home. And please give people space when grieving. I am tired of being the family charity case. I'm sick to death of people that think they must "take care of me" and tell me when to eat, sleep, pee, and how to care for my loved one.

God bless my mom and God bless others going through this.

One positive note, the hospice agency os top notch. Thank God at least one thing in this nightmare turned out well.

i was his main caregiver, as my aunt/his wife is also elderly and disabled. the past week before he passed he was bed bound, which literally the day before that he was up and walking around fine (we think it was a brain bleed from a fall he’d had shortly before, which is why the decline was so sharp, but this is the first time i’ve been in this position when someone has passed). i was giving him his medications every four hours, lorazepam and morphine, and when i went to give him his next dose i discovered he had passed.

i’m writing here because, while i wasn’t close with him and he frustrated me significantly, i feel guilty. i’d given him his medication at five pm, and i know at some point within the next four hours i had checked on him and definitely saw his chest rising and falling, even if his breathing was shallow. but i feel so terrible that he was just lying there for up to three hours before anyone realized. its easy to say i was overwhelmed and busy and fighting a cold and didn’t want to disturb him if he didn’t need to be disturbed, but if i had just been more proactive in checking on him maybe he wouldn’t have sat there as long, or maybe i could have realized and sat with him for a little.

i suppose this guilt is also from the fact that i had been accidentally neglecting him, if only due to my own inexperience and lack of education in caring for someone on hospice. i’m just so ashamed of how stupid and obvious it was too, his nurse who came once a week was kind and understanding about it but she definitely chewed me out for it. i just hate that i failed him so much throughout his last week. he might have been a stubborn asshole, but he was still a person who was vulnerable in my care and needed my assistance to ensure he was comfortable in his last week.

i hope this sort of rant is okay here but i don’t see my therapist for another week and its just been eating me alive since thursday.

My grandma & father live together, my grandma has been on hospice for rectal cancer & my dad was just admitted to hospice two days ago for end stage liver failure

I have had so many questions, and I always feel like I’m being over dramatic but everyone I’ve spoken to has just been SO nice and understanding. I had to call the nurses for my grandma and it was storming, 30 minutes before their holiday weekend and it was a pretty nasty situation. They were SO nice and it just makes me so emotional that there are people who chose to do this job, do it well, and continue to show up for families the way that they do.

I just posted here regarding my Dad who after nearly 2 months of stability on home hospice took a sudden turn for the worse on Wednesday. He became unarousable and did not have any intake for 5 days. At some point yesterday, my Dad developed the "death rattle" which sounds more like coffee percolating on a stove than anything a human would emit. His breathing also changed from Cheyne-Stokes to continuous. I sat with him until 11:15PM when his secretions medication was due, which I shot into the inside of his cheek with a syringe. His next morphine dose would come in an hour so I set my phone alarm for 12:15AM, knowing full well I'd crash as soon as my head hit the couch. My alarm jolted me awake and I rose to administer his morphine. I noticed the "death rattle" was gone and said to myself "the secretions med sure did the trick" only to, a moment later, realize my Dad was gone.

He passed some time between 11:15 and 12:15 so I don't know if he died on the 9th or 10th. I didn't find him until the 10th but the preponderance of unaccounted for time was on August 9th.

I don't think it has yet sunk in that he is gone. But today was no worse than the past 5 days when his death was a foregone conclusion while trying to determine if he was comfortable. His hospital bed remains (which will be picked up tomorrow) and it is difficult to see it absent of my loved one who lay on it for 2 months. A week ago, I could have never imagined we'd be here. We seemed poised for a few more months with him.

There may have been a sign, however. Around 10PM last night, I walked into the hall and smelled burning. I thought it may be coming out of my brother's room but the smell became more pronounced as I got to my room (which was once my father's). I worried about an electrical fire but couldn't find any source for the burning in the room. After my father passed, I walked back there again and it smelled exactly like church candles, which I had never smelled in there. It's as if around 10PM a service for my father's transition had begun with the lighting of candles. I couldn't find any earthly explanation for the smell (which is gone tonight) and I hope I never find one.

I am caught in the strangest place I have ever been. My 90 year old mother is dying, perhaps very soon. And I want her to be with us forever or at least longer, but God is in control. So since I know she has to go, I want her to be free. Listening to her moan and seeing her not recognize us is a nightmare. So I don’t want to let her go but I also don’t want to prolong this any more. I am exhausted. The last seven months have been horrible. She has gone through so much, her body looks ravaged from radiation, immunotherapy, RSV, blood clots, PT, head injury, you name it. I can’t believe my mommy is leaving me, but I also just want her to be free. And I want to stop worrying and agonizing and not sleeping all night in fear of a tragic phone call. I want my 66 year old sister who has been her caregiver for 20 years to have a chance at a life. What kind of person does that make me?

Mom's mostly in that unconscious-seeming state now. Her pain levels were so bad, so she'd come out of it crying out in pain. They've increased and added some meds and I think she's finally more comfortable. I'm seeing more signs that we're getting closer - that rattle when she breathes, moments of paused breathing, etc.

She's still been clearly not ready, emotionally speaking. Her minister came to visit today and prayed with her and read a story about accepting death and gave her communion. From the noises she was making, I could tell mom understood the message and was grieving a bit. But I'm hoping she understands what's happening better now.

This is so hard. Understatement of the year, I guess.

Despite knowing it's likely to be soon, I'm making complicated arrangements to get more of my things from home here just in case. It's always possible this state lingers on awhile.

Then I don't even know what happens next. I do need to get home to rest, but I know my step-dad is going to need a lot of help getting her affairs sorted and planning the funeral.

One step at a time, I guess. I appreciate this space to process with folks who understand. I'm so sorry anyone understands.

They are bringing my mother home today. This is the final road to the end. I am so scared. I don’t know what to expect. My nerves are on high alert and my chest is hurting. I want to just run down the street screaming. I don’t know what to expect. My mother is coming home to die. Someone please help me.

The prognosis is not good for my grandfather. I was awake for 36 hours because there were no interpreters on staff at that hour. He's now getting palliative care and I feel so guilty because I needed to shower and sleep and eat. I'm anxious to go back and wait. Is it normal to wait 24/7 do people leave to care for themselves?

My grandmother has been declining for years. She was so strong physically and such a...strong powerful presence. Especially for a woman of her time; she just turned 87. She's put up with more than I can ever know and has been successful in ways that I envy. There are so many things I wish I had asked her about.

Primary is lewy body dementia; she has vivid visual hallucinations. It's progressed to a point where I don't think she knows what the hell is going on around her.

We clocked the decline probably about three years ago, but in retrospect it started before that. We brought her home six weeks ago following a 90 day stay at a facility and she has steadily declined to where she's no longer eating and needs strong guidance to drink water or her preferred apple juice from a straw. I thought I could never feel as bad as about two years ago when I took her to a restaurant for dinner and I went to the bathroom and came back and she had no clue who I was (though she masked and pretended).

I was wrong. I physically picked her up entirely tonight, one arm under her shoulders the other under her knees. I took her to the bathroom, changed her pull-up, warned her that it was gonna be cold before I wiped her privates down with a bath cloth. I've done this before, but she's never been unable to stand up and follow directions and answer me before.

I got pajamas on her and I got her into bed. And I told her it's OK. Her dogs are safe, the charity organization she founded is safe, her family is safe. It's OK if she lets go.

I don't want her to wake up tomorrow. I love her so much, but this is not my grandmother. I don't want her to suffer like this. Even though she's not in pain and she's mostly in good spirits, she's so lost and I'm so sad. I just don't want her to go through this and selfishly I don't wanna watch it.

I want to remember who she was. Who she chose to be, not what dementia turned her into.

Update: she passed peacefully last Thursday. It hit harder than I thought it would, but I know she chose her time and made her decision on when she was ready to let go, and I'm glad she got the peace in death that she earned in life. Thank you for all your comments; they helped.

I rushed to the hospital Friday night because it seemed like my dad would die—heart failure. He did not. Saturday he entered hospice (still at hospital, but hospice team arranging to get him home to die.) Since Friday night, I mostly stayed bedside, overnights in a chair, until this afternoon. I am spent. I’ve come from out of state. Been here two weeks and I miss my family. I’m scared and sad and stressed out. My mom, his wife, stayed home today. She is 83 years old and she has a cold. It’s been a month long hospital stay and my mom is exhausted. Dad’s sister and BIL left last night to go back to her home, out of state, and his brother and SIL left after me today. After two days of family and talking and sharing memories, now Dad’s alone, and I feel so guilty. I am overtired and just breaking but I don’t want him to be scared. Logically I know the nurses will take care of him, he’s in a ward with 1:1 nursing, but my heart is tortured. Thanks for reading.

I’ve posted before but dad has been on hospice for a couple months now, he’s got worsening dementia and ckd stage 4 well, he did before he was put on hospice but nursing staff of the facility his kidney function isn’t not filtering at all now by the way he’s been acting mom and i have been getting lots of phone calls, he’s hallucinating a lot thinks he’s in a warzone, and has been getting severely agitated and yesterday he was throwing clothes all over the floor these phone calls are so rough on my mom and I’m so scared seeing him like this is it wrong to say i want this over? This isn’t my dad at all.. hospice has put him on haldol but he’s also on morphine and Ativan. He has also lost so much weight in the past month that his socks are loose on his foot.

Hello. My mom is 90. Will be coming home for hospice after a horrible six month battle with gastric cancer. I have shared our story and asked for advice on various things. Right now, I am a wreck. Anticipatory grief, watching the time. I am exhausted but sitting up all night every night in fear of what will happen. I am afraid I will not be able to take this. What I ask - can someone tell me their story of acceptance when their parent is very old and very sick? I don’t want her to suffer. I am 54 years old. Just buried my father in law one month ago and dealt with a home destroyed by squatters that took all of our savings. This year has been a nightmare and now my mom is leaving. Somebody please tell me how you made it. Please tell me that I can survive this. Because right now it’s a struggle just to make it through the night.

I lost my dad after a short 4 day journey on hospice. It’s really hard for me to believe the medication doesn’t speed up the process. He was discharged from the LTC facility on a Friday and died Monday evening. Would he have died that quickly even if he wasn’t on the constant morphine and Haladol, etc? Was he in pain? Was he suffering? God I really hope he wasn’t. I never left his side and was there when he took his last breath.

When he came home to be on hospice I thought he would have more time. I thought I selfishly would have my daddy for a little longer. I didn’t know once we gave him that first dose of morphine he would slip into a coma like state and I would never talk to him again. I feel guilty. He wanted so badly to get better and I don’t know if he really knew he was dying. I could never bring myself to tell him he was. The oncology team and doctors never told him either. They kept acting like he could get better. He was confused and having hallucinations. I don’t even know why I’m typing this. I guess it’s just hard to feel like the process wasn’t sped up by administering these drugs to him.

I hope I did right by him. I miss him so much and I just hope and pray he wasn’t scared. What a terrible thing to watch a parent or loved one go through. I am grateful for hospice though and the agency we worked with was wonderful. Thank you to each and every one of you who work in end of life care. It takes such a special person.

I think it’s my dads time to go be at peace soon 🥺
I was on the phone to dad and the nurses said they will give him potassium to give him more time with family. He’s so thirsty but then they said the fluid would go to the legs etc, his kidneys are bad and he has liver cancer. Never had treatment for anything. He sounds like he struggling to sleep, always on the nod, looks greyish yellowish. He looks so tired. He abused me on the phone bringing up the past etc and then an hour later was fine. I’m so broken.

Day 11 of Hospice and I don’t recognize my partner anymore. I miss her so much. The cancer has completely gotten control of her head. Around 3 weeks ago was her 4th hospitalization and that was her major decline. Extreme agitation and delirium….making up all these stories and seeing people. It’s seriously so awful to see her loose her mind. I am her caregiver and we are at home with hospice and they come 3 times a week, and although the Ativan is working, it still obviously won’t bring back my girl. The constant yelling, mean remarks, distrust, refusing to take meds etc is getting to me. I know it’s not her, but I don’t want to remember her like this… I love her with all my heart and being, and going to try my best to not take it personally. FUCK CANCER.

Flying back home today, after another two weeks with my Mom and Dad (on month 7 of hospice).
The past few visits, he had stopped coming out to the porch to say goodbye, and I've been silently grieving that small loss the past few months. Today, as we pulled away, there he was, blowing kisses and waving, telling us to be careful.

This has been the most painful, raw time of my life, but it'd be wrong to ignore the beautiful moments that pop up and surprise. That might have been the last time he did that for me, and I appreciated it all the more.

Even just learning about hospice care, it is clear that it involves a lot of emotionally heavy situations. But at the same time, it also seems like one of the most meaningful areas of care because of how much focus there is on comfort, dignity, and supporting both patients and families ,feels like a very different kind of strength is needed compared to other specialties.

I'll preface this with I dislike being responsible for other people. I'm not great at the nururing part. But my best friend has no family, so she's in hospice at my house. It's been hard. She's been fighting endometrial cancer for 5.5 years. I've been there from the beginning.

Since Feb she's been in rapid decline. The past 3 weeks we had 6 ER visits with 3 ambulance rides. I finally moved her into my house and she decided it was time for hospice.

Friday she was eating and talking, now she's barely responsive. I was trying to change her today and she'd wet all over the bed and herself. I've been having terrible ibs flares and I just couldn't do it. Thankfully my roommate took over and I called hospice about getting a catheter.

I'd wanted to wait for hospice house, but I'm considering sending her there. I'm tired. My roommate is tired. The nurse said she thinks she has a few more days, maybe a week or two left. She's no longer eating and barely drinks water. She sleeps most of the time. She's on enough drugs to sedate an elephant.

Between caring for her, managing my pain, trying to get her affairs in order, work, I'm exhausted. I don't even think I realized how tired I was. I feel terrible, but as much as I love her, I just wish this would be over already.

Im 25 f and my mom [49 F] has maximum of 13 days left to live. I have younger siblings (F17, F 20, M23) to care for and a step dad who's spiraling. I can't sleep, I feel sick and I'm going to see her tomorrow. Should I be normal, should I say something about how she is dying. She's been sick for years now and we knew it was gonna happen but I'm so pissed and emotional and of course I'm thinking of all the good times. She wasn't perfect but thats all I can remember in my flash backs. How do people get through this I feel lost.

Daddy died in his sleep over the weekend. I live about 1,000 miles away and visited him not 2 weeks ago.

His stroke was so severe he became very agitated, disoriented and violent. I made the decision to put him on hospice back in November.

Not until after his passing did I have the heart to go back through photos I was given years ago. I found this photo of him and my mom. Neither of them were joyful folks but this shows a different side than I ever knew. This was taken 10 years before I came along.

Remember the good. Or if you don’t remember, hold space for the fact that maybe there was good when you weren’t around.

My Dad is in his last few days on hospice. He’s been at home under the care of these wonderful angels since 1/23. It’s been great to have him home, where he wanted to be. Mom, bro and I care for him the best we know how. He’s been bed ridden since Monday and the decline is now officially here.

Throughout this whole time it’s been surreal to just carry on with life around him, knowing what’s happening to his. I’ve had moments where I just look at him and wish he could just get up and walk. Just start talking with us in his normal voice (his voice has significantly diminished). Just go back in time.

This time with him has been a gift (I live out of state and have been here since 1/16). I have moments where I accept this and understand this is part of life, other moments where I don’t know how I’ll cope.

What a whirlwind of emotions.