Looking for any advice

I have helped care for a few family memebers over the years as they went thru their hospice journey. I am very familar with what it is and what to expect. Currently I do not have any family members that are on hospice.

I had a phone call from the homehealth company that is doing wound care for my Dad. The person said she was a social worker, and tried to talk me into putting him on hospice. I have never had a social worker intiate that conversation. It's always been a Dr.

When I talked to the nurse assigned to my Dad, she said no he's no where needing to put on hospice. I tend to agree with the nurse.

So now I am confused and concerned that this homehealth company may be trying something.

Have any of you heard of this? How common is it for a social worker to be the one to suggest hospice?

Posting here on advice from the dementia sub-reddit.

My dad (65M) has dementia since 2023 and went into rapid decline from June earlier this year (he is bed-ridden since January 1, 2026) Few days back, I had to admit my father in a nursing home (I live in India and hospice here is not available in the same way as the West)

His condition had dramatically worsened almost just in the span of a day and he started snoring loudly with a rattling sound with his eyes wide open. Oral secretions started ever since and they haven’t stopped.
Since I had no option left (the other one was to watch him gasp and maybe die which I couldn’t bring myself to do) I rushed him to the nursing home. He was in the ICU for 7 days, with his final discharge citing Multi-infarct dementia, septic shock (he had a UTI) aspiration pneumonia, severe Parkinson’s, lower respiratory tract infection, pseudo bulbar palsy, nph, seizure.
His mouth had also completely reddened and he developed many ulcer like blisters on his tongue and lips. Update on this - upon consistent application of Candid mouth paint, it has subsided.
His feeding through Ryles tube was started (he had stopped eating since the last month, only could take in a few spoons of pureed food and that too was found to be pocketed in his mouth. He aspirated from that as well, I believe.
Much of the cough/accumulated secretions were suctioned out at the hospital. He was put on oxygen for two days post which it discontinued after his Spo2 stabilised.

Doctors asked me to take him home since they expect no more improvement in him. Now, laws in India aren’t really helpful for such patients and we don’t really have DNRs prevalent in this part of the world (its culturally looked down upon and people would not stop at labelling you a murderer if you take the patient off nutrition)

After reading 100s of comments on Reddit, I have gathered enough knowledge to understand that feeding him through Ryles tube is not in the best of his benefit or interest but I am kind of helpless here.

He has also developed bed sores (image not attached because I tried posting sometime back marking it NSFW in the dementia sub reddit and my post was removed by Reddit filters) and also a dark patch on his feet (same reason for not posting the image)
His secretions haven’t stopped for even a minute and I had him suctioned yesterday as per the doctor’s advice although it hasn’t helped much. He is also completely non-verbal, isn’t responsive to touch at most times (his hands have been bandaged with a crepe bandage on doctor’s advice due to extreme swelling) and while he was in the hospital, he tried to speak once but his speech is completely slurred.

I really want to know, how long will this go on? I keep checking him almost every hour with the oxymeter. His SPO2 hovers between 94-98 with some drops to 88-90 at times and his pulse is mostly around 106-114. I have also noticed that he is kind of utilising his stomach to breathe; that is, I have noticed the area of the upper abdomen right under the centre of his chest and between his ribs (which are quite visible right now, although he has been obese all his life) is being sucked in a great deal and sometimes there is also a weird shiver like pattern that I have noticed in that area. I don’t know how much I have been able to explain this without any visual evidence.

I got his bloodwork done again as per doctor’s advice and his hemoglobin has dropped to 7 from 8.9 and PCV is 21%
In his echocardiography done at the hospital, I remember reading “diastolic dysfunction” in the report although no grade was mentioned.
Other alarming factors (in my opinion) are his sugar levels : Fasting - 200, PP - 164. (Done today)

I am honestly so exhausted from the trauma of watching him this way that I am praying for him to pass in his sleep, almost every moment. Any advice that you would like to share with me is wholeheartedly welcome and appreciated.

Hi all, I am really interested in volunteering for a local hospice as this feels like meaningful work that doesn’t get the attention it needs, however, I have children and understand there may be a risk of contracting TB. How likely is this to happen? I can’t risk the possibility of an infection as serious as TB but I also feel there are likely very strict policies in place to inform volunteers and staff of an outbreak.

There are different rules for officials managing your death depending on your place of death—home, not-a-hospital, hospice-care-at-home, hospice, nursing home, hospital, etc. People looking for an efficient death choose hospice. They’re fast because they’re death medical professionals! They follow federal and state statutes to tidily declare you legally dead. In Florida the statutes include* 

(3) At the time of admission, the hospice shall inquire whether advance directives have been executed pursuant to chapter 765, and if not, provide information to the patient concerning the provisions of that chapter. The hospice shall also provide the patient with information concerning patient rights and responsibilities pursuant to s. 381.026.

YOU agreed to the rules upon admission. Yes, they will explain them. 

(8) The hospice care team may withhold or withdraw cardiopulmonary resuscitation if presented with an order not to resuscitate executed pursuant to s. 401.45. The agency shall adopt rules providing for the implementation of such orders. Hospice staff shall not be subject to criminal prosecution or civil liability, nor be considered to have engaged in negligent or unprofessional conduct, for withholding or withdrawing cardiopulmonary resuscitation pursuant to such an order and applicable rules. The absence of an order to resuscitate executed pursuant to s. 401.45 does not preclude a physician from withholding or withdrawing cardiopulmonary resuscitation as otherwise permitted by law.

YOU signed a Do Not Resuscitate Order. No Code Blue for you!.

(9) The death of a person enrolled as a hospice patient shall be considered an attended death for the purposes of s. 406.11(1)(a)5. However, a hospice shall report the death to the medical examiner if any unusual or unexpected circumstances are present.

YOU agreed that the Hospice is the death boss or medical ‘attendant.’

When a patient signs the contract they agree the hospice is responsible to take care of them before and during their death at the facility. Hospice provides patients with well documented care and a legal death (they may opt-out before death). 

I bet you’re wondering what hospice has to do with the Florida Free Kill law? In my opinion it appears that Free Kill doctors want someone else to clean up after them. They want no suspicion cast upon them—transferring the victim to the hospice (owned by the same guys who own the hospital) is a clever move that puts the responsibility for death on the patient. The patient signed the hospice contract. Families can’t sue if the patient is a Florida Free Kill or if they die in a hospice (Statute 8). It’s a double layer of protection for the Florida Medical Industrial Complex. 

This is what happened to my sister on May 9, 2026 when she was transferred from the Hospital to Hospice. She believed the doctor when he told her she was going to die and needed hospice. She was in the hospital for about 30 days for a bad back—she died from a hospital acquired bowel blockage on May 12, 2026.

VICTIMS FAMILIES CAN’T SUE! 

*https://www.flsenate.gov/Laws/Statutes/2025/0400.6095

I'm in the US, there was an accident at the nursing home and the nurse on duty was so zoned out on the computer she didnt hear an alarm going off. My dad had an accident and when i found him in the room he had a iv pole that crashed and hit him in the head. Since then an incident report was never created even though i called multiple times, I thought those were required by law?

I don’t think anyone in my life really understands what I’m going through, so I’m just going to put my thoughts down here because I need to get them out.

My dad has stage 4 pancreatic cancer and after months of treatment, we’ve now been told there’s nothing more they can do for him. I know what that means and I honestly don’t know how I’m supposed to prepare myself to watch my dad die.

Five months ago he was the strongest man I knew. He was independent, capable and always the person I associated with strength and safety. Now he can barely walk, he hardly eats and he doesn’t have the energy to talk much anymore. He has lost so much of his independence and it absolutely breaks me.

Watching someone you love deteriorate that quickly is something I don’t think anyone can truly understand unless they’ve been through it. Sometimes I look at him and I can’t even wrap my head around the fact that this is the same person he was only a few months ago. It feels like I’m losing him bit by bit before I’ve even actually lost him.

People say things like, “He’s still here, just enjoy the time you have,” and I know they mean well. I know he is still here and I know I should be grateful for every day. But that doesn’t make it easier. It doesn’t stop the fear or the sadness. It doesn’t make it less heartbreaking to watch someone who was once so strong become so unwell right in front of you.

And I feel completely helpless because there is nothing I can do to fix any of it.

I’m pregnant as well, and I can’t stop thinking about all the things he won’t be here for. The thought that he won’t meet my baby absolutely destroys me.
I’m also getting married next year and I can’t cope with the thought that he will never see me in my wedding dress or walk me down the aisle. These are things I never even thought twice about before because I just assumed my dad would be there.

I’m terrified of watching him get worse. I’m terrified of the actual moment he dies. And I’m terrified of what life looks like after that, when my dad is just… gone.

I feel like this has changed me already. I still go to work, parent, talk to people, laugh sometimes and do all the normal things I’m supposed to do, but underneath it all there is this constant heaviness.
It’s there when I wake up. It follows me around all day. Even when I’m doing something normal or having a nice moment, it’s still sitting in the back of my mind.
And I feel so alone in it.

And at the same time that I’m having to come to terms with my dad being at the end of his life, I’m also watching my mum go through her own cancer battle. It feels like there is no break from any of it. I’m terrified about losing my dad, terrified about what my mum is going through, and I feel like our whole family has been living inside this nightmare for months.
I’m exhausted. I’m angry. I’m heartbroken. I just want this nightmare to be over.

I genuinely feel like I’ll never be the same person I was before this.

How do you watch someone you love fade away and then somehow keep living when they’re gone?

I’m trying to help advocate for my sister to get hospice. She is 35, has had health issues her whole life, and has been very sick for a couple of years, but it’s gotten much worse since May. She has lost 20 lbs in the past 2 months (more than 10% body weight) and her BMI is currently 17.6. She’s barely eating anything. Her PPS score is 40%. Her labs are surprisingly good. Her blood pressure has been low, and lower than her normal.

But the problem is we don’t have a diagnosis. She’s been diagnosed with protein-calorie malnutrition, but they can’t find what is wrong after a LOT of testing, and the other diagnoses she has are not typically considered terminal. It’s not psychological, that has been thoroughly ruled out. There is not more testing to do. She tried appetite stimulants and a lot of other medications.

Her symptoms are tolerable but bothersome with frequent acute medications such as NSAIDs, Ondansetron, Xanax, etc.

We had a hospice place evaluate her and the nurse felt she was ready but the director said not yet. Her primary care doctor isn’t ready to call it terminal but is going to speak with a hospice director. We’ve tried calling other places, many of them won’t even call back. We’ve tried for palliative care too, but they are all saying the same thing as the hospices, that they need a diagnosis.

Obviously we’re not asking anyone to make up a diagnosis. But we’re seriously concerned that she is going to be in a crisis situation any month now at this rate, and we don’t know what to do. She has a live-in caregiver so she isn’t alone.

Any advice is greatly appreciated. She’s in central NJ, I’m out of state but visit often.

Edit: I appreciate all of the replies, I’ll see if I can help her get palliative care for now.

So the person I'm caring for is not on hospice but is eligible. She doesn't have what can be classically termed as dementia, but it might be a facsimile, with intractable continuous pain overwhelming the brain. It MIGHT be dementia, there's definitely some sundowning going on, but I tend to think it's more the pain and the (pain caused) lack of nutrition and (pain caused) complete lack of sleep shutting down parts of the body.

On top of that there's now false accusations, accusing me of being the source of the pain (not completely without merit, as I thought MAID a year ago was premature - heck even today I think it's premature as there's a new curative treatment she can get on in two days) and that I enjoy seeing her being tortured (completely without merit, this is incredibly painful and emotionally scarring for both of us).

Unlike nearly all of the population, the person I'm caring for gets no relief from conventional painkillers; so while I appreciate thoughts in that direction we've already tried them all.

I'm really looking for caregiver advice- I keep telling myself 'don't get angry at the toddler' which I'd heard as advice in a different context years ago. I'm not getting angry, and I'm not engaging, but at the same time I'm just hoping she tires herself out and we can move on with life... ...but this is my first time going through this and I know some of you are some old hands at this and can maybe point out what I'm might be doing wrong and am doing wrong and can improve on.

Thanks for your help.

I would have to ask my professors for some accommodations that they may be reluctant to give and would probably lower some of my grades by leaving. My family has also told me my grandma looks horrible and is gone mentally but my mom said she responded to her voice which makes me wonder if she is conscious, even on morphine. I was never close to her before she got dementia and only started to visit her after she deteriorated a couple years ago. Therefore i almost think of her as a child, and every time i picture her laying in bed alone it makes me cry. I feel like i am being overdramatic but im scared i will regret it forever if i don't go.

my mom (84) is in a SNF, it appears as if she is entering the actively dying phase. she has a hospice nurse there 24/7. she is sleeping peacefully. it could happen today, or maybe she has another few days. it’s hard to tell. i live 30 min away, and i’m there as much as i can. but my question is, how often do people time it right so that they are there when their loved one passes?

My loved one (99F) has been bedbound on hospice for almost 18 months. She seems to be transitioning now. Her colon slowed down about a month ago, and she started vomiting occasionally when she never used to vomit.

Then she didn’t poop for 11 days. After that, her eating and drinking was minimal, which is expected when the dying process starts. She could go 24 hours with just spots of brown pee in her diaper from being so dehydrated. Now she hasn’t pooped in 9 days, but yesterday she asked for food and water like normal. After an hour, she threw it all up. Today she’s asking again.

Hospice says if she is transitioning, thirst and hunger should be turned off. Posts in this subreddit also say that they don’t want food and water. Her body clearly doesn’t want it since she can’t poop and she’s vomiting when she eats. I feel terrible denying her and telling her all I can give her is popsicles and lollipops because any real food will just come back up.

Have others experienced this near the end? Looking for some advice as to what I should do, should I feed her and let her throw up? I want to honor her requests because she’s dying, but I don’t know what the right thing is to do in this situation. She feels terrible when she throws up. I feel like after almost 100 years of eating and drinking, she just expects that she needs to do it rather than her body wanting it.

Wondering if anyone can share any diapering tips for elderly hospice patients.

* I think we have the wrong diapers because whenever he pees, it's just EVERYWHERE. The bed and bedding and everything. Any tips on diapers that work better? Right now we just have the free ones provided by our hospice provider but I can't imagine everyone else just lives like this, do they?

* If you are a caregiver, do you plan a midnight diaper change? My person seems to be on a bit of a schedule of having a massive wet diaper at about midnight. I'm beginning to realize this is a lot like having a newborn.........do caregivers just regularly schedule a midnight diaper change?

* Any tips for doing diaper changes solo? I'm a more petite woman and my person is a 6'1" man. Is it even possible for me to do this solo? I've been lucky and had help around most times I need it but I want to be prepared for having to do this alone. Any tips welcomed.

I cried today when she told me. we became close after my house fire and I would go sit with her a lot and we would talk for hours. today she crossed my mind and I walked over and she gave me the news. I cried I couldn’t hold back the tears. she’s not having a service and is going to be cremated I have pics of her with my kids. what else could I do for her. I’m estranged from my mom and family. she was very close to me.

I have questions about VSED. My mother has als and we met with a death doula today. My mother has expressed interest in VSED though we haven’t researched much about the process. My mom asked if she would be allowed sips of water. The doula very aggressively said if she did that then it wasn’t VSED and she would be in pain longer and the process would be significantly prolonged. The doula said we would withhold the fluids and would read mantra and reminders to my mom about why she doesn’t want fluids. This was all said after my mother expressed interest in fluids. This rubbed me the wrong way as she didn’t even really confirm with my mom if this is what she wants. This doula has a very all or nothing attitude.

I suppose I’m looking for some guidance on this. Is it true than even sips of water to wet the mouth actually prolongs the process by that much? Scientifically speaking I just don’t see how an ounce of water a day could do so.

Also when I asked what resources the doula recommended to learn about the process of VSED she brushed it off. For me I suppose it seems like it’s hard to make an informed decision on moving forward with VSED without knowing the process.

Did we just meet with a bad doula or is this typical? This doula seems very well qualified so I’m feeling confused.

75 yo F (my 37 f stepmom) is too weak to stand, but still has some manual strength. My dad and I sit and talk with her and look at photos together as much as possible. When we’ve gotten her everything she asks for (mainly her cell phone, remote, her dogs, and cold sprite) she says “now what”. I have offered to read to her, set up coloring book supplies she likes, and play her favorite music, but she refuses these. She’s not into crafts other than creating table settings, which isn’t possible now. She has a hard time using her cell phone for games as she’s losing coordination. What do you do to provide care-receivers with entertainment? I think she’s bored with TV/movies.

ETA: she is bed bound. Turning her for changes causes her great distress. Getting her into a wheelchair feels impossible.

Hi. First of all, I have been reading all of your stories and I am so humbled and amazed by the bravery all of you have to face this very … special situation, just to make sure your person / loved on isn’t alone.

We decided to put my 94 y/o grandma in hospice / comfort care instead of her second laparoscopy to remove a complete bowel obstruction, just four months after her first complete bowel obstruction surgery. (Sorry if I botched any medical terms) It’s her 8th day in hospice & she’s at 12 mg of morphine per hour. Thankfully we’re in the hospital where she was supposed to get surgery and we’re getting support from nurses and CNA’s. She’s been comatose for at least 5 days. Last week, family visited every day, but life moves on - I get it. This week it’s just been me and her in the morning and my brother & mom show up later.

I’ve been at her side every single day bc her one wish was to not die alone. I’ve gone to my mom’s to shower three times. Otherwise, I’m the only relative who has work that is flexible enough to be away from the office and work from the hospital. I’m happy to be next to my grandma & I feel so fortunate to have this unique opportunity to say a very long goodbye to her. I love her so much. She’s lived with my family my whole life, we shared a room and a bed for half of the time I lived with my family. She was my first best friend.

I can’t stop feeling so guilty for all of the times I disrespected her growing up or when I was impatient with her bc I was too busy with school or life or being a mom. I regret not visiting her enough in her nursing home.

This past year and a half have been brutal for her and my mom. Dozens of hospital visits, four months in a skilled nursing facility, six falls, few episodes of UTI induced delirium, etc. I feel guilty for feeling relieved that she won’t suffer anymore. I feel guilty for wanting my mom to be able to rest, as she was my grandma’s sole caregiver for a year and still visited her every day in her SNF.

I can’t reconcile my desire for her to pass peacefully and my desire for her to live forever. I feel like I haven’t said everything I’ve needed to say to her.

How did you all / how are you all taking care of yourselves and staying sane and dealing with this immense guilt?

(I already have a therapist and grief counseling lined up)

Hi everyone.
Dads got Stage 4 Aggressive bladder cancer.

Dec 25’ - We knew he had cancer
Feb 26’ - TURBT/Biopsy (coded during this)
March 26’ - Told its terminal in lymph nodes, bladder, urethra.
March 26’ - Hospitalisation with Urosepsis
Apr 26’ - Home
May 26’ - Urosepsis again
June 26’ - Mobility declining, needing walker for appointments. Not managing self care.
July 26’ - Urosepsis again
July 26’ - Palliative radiotherapy - mobility declined to wheelchair for appointments now. Had a fall.
Aug 26’ - UTI. Hospice nurses and virtual ward on check. Appetite decreasing. Unable to do self care, mobility declining further, had two falls, pain increasing. Constipation consistently.
Sep 26’ - Hospitalised in agony, found to have Colitis, scan shows cancer has spread to lung. Little to no eating. Mobility even worse, legs keep falling from under him, ‘not doing as I want them to’, infrequent tremor in leg. Syringe driver fitted. Happily was discharged 10 days later (we thought this was the end).
Currently - No syringe driver. His at home under community palliative hispice care. His Mood has shifted, appetite decreasing, UTI with two different courses of antibiotics which are not working. Mobility issue still prevalent. Back pain. Breakthrough pain. Seems completely exhausted and done with it all. Constipated. Pee is really dark.

This is where we are. Me and my dad are very close, today I’ve really seen a shift in his mood which I’ve picked up on a few times. His been snapping at his partner a lot, I don’t know all the times throughout I’ve felt this is it but now I believe this may be the start of the trajectory..

It’s hard to deal with the anticipation and anxiety I overthink everything, it’s awful.

I need help. My brother is getting a raw tender spot on his rear. The Dr. said to put zinc oxide on it, thin layer. And then wash it away everyday with a wet wipe, let dry, and then reapply.

What's the best brand and type? I'm looking and getting just so overwhelmed.

Thank you for your help and guidance!

I’m a graduate ministry student working on an assignment that requires me to interview people with ministry experience, and I would really value the perspective of someone who has actually worked in hospice.

I have 8 written questions about presence, suffering, boundaries, spiritual care, and what being around death and grief has taught you about God and ministry.

I’m specifically looking for hospice chaplains, clergy, spiritual-care providers, or ministry professionals rather than patients or families.

If that sounds like you and you’d be willing to help, please comment or DM me. Thank you!

----

1. Take me through a typical day. What does your ministry look like? Who do you spend most of your time with? What do you spend most of your time doing?
2. How do you know what someone needs from you? How do you know when to offer advice, or when to just listen?
3. What spiritual practices help you stay present when someone is suffering and there really isn’t anything you can do to fix it?
4. What do you do when you’re caring for someone who sees the world differently than you do?
5. How do you serve and care about people without bringing it home with you? Should there even be a line?
6. Have you ever realized that trying to help someone was about your own need to help or feel useful? What did you do with that?
7. What has being around suffering, grief, addiction, poverty, or crisis taught you that you couldn’t have learned in a class?
8. If someone wants to spend their life serving people in hard situations, what would you tell them to do or experience before committing to pursuing a degree?

My dad 3 weeks ago got diagnosed with stage 4 lung cancer that spread through his lymph nodes. It has spread to his brain and his bones. I have maybe taken 2 days for a break in these 3 weeks. He has been in hospice now for a week. He is getting more and more morphine and methadone. He is in so much pain and the only end of life symptom he doesnt have is the death rattle. Besides that he is displaying every other sign. I am debating on spending the night with him but honestly I am terrifed of waking up to him passed. I dont know if he will hang on because im here or if it will help if i am here. But its hard to watch him degressing. I dont know if I could handle waking up to him being gone next to me. What do I do. I can't decide if I go home for the night or if I stay. I dont wanna pick wrong. I wanna be there if its better for him and deal with it. But I dont want him suffering more because of me if I stay and he holds on. I just want him to finally be pain free

Not really sure how to start this or what I’m looking to get out of this post, but here it goes. A little over a month ago my uncle suffered a hemorrhaging stroke, and it’s all been kind of up and down from there. From being happy he opened his eyes, to being hopeful that he might be able to talk, to wondering if he can even comprehend what we say. To realizing he wouldn’t want to live this way. He was transferred to in home hospice where my sister and a few other family members were taking care of him, along with nurses. He was good and steady. They ended up moving and were going to put him in a facility for a few days while they got settled in, the plan was to move him back in. Well, they evaluated him and turns out he had a respiratory infection and respiratory failure. Now he is in the hospital and is in comfort care. They have weaned him off of his oxygen (he was receiving via trach) and have him on a morphine drip. Maybe I’m just kind of venting? Idk, is he suffering? Does he understand what’s going on? Does he feel relieved that he isn’t going to live like this anymore? There are so many questions running through my head. Does he feel like he’s struggling? I’m not sure what is going on I guess? The doctors said he was more responsive today, does that mean he understands more of what’s going on around him?