Without going into too many details, my dad is suffering from late stage cancer, and the doctor has given us weeks. We've been fighting the disease for three years and nothing is working anymore. I am in a university abroad with half my masters degree still left. That leaves just my mom and my younger sister (who's still in highschool) to deal with this situation. And it's getting too much to deal with. Dad needs care, but we aren't able to provide that sort of care at home.
Are there any good palliative care centers, or hospice services in Pune? Anyone who's had to deal with this situation, if you can make any recommendations that would be really helpful.
PS. I've already visited the CIPLA care center. The kind of amenities and services are not adequate. Especially the living facilities for attendants. We don't mind paying for palliative care, as long as it's good.
I’ve been doing good since thanksgiving being flare free, then almost 2 weeks ago I entered into a flare that’s been hell. I’ve been in the ER 3 times in the last 2 weeks with the nausea and severe stomach pain. I was just there last night. They ask me what works which is iv Ativan, iv phenergren and iv morphine, give it to me and send me on my way.
I normally take Ativan and phenergren but it hasn’t worked in this flare. I’m so exhausted from fighting and it’s making me very depressed. I had a telephone appointment a few days ago with my primary doctor and I mentioned Marinol but she wants to wait until my next appointment on February 22nd to discuss it more.
She also mentioned palliative care. What is that? Does that mean I’m dying or they have given up hope for me? She wants to talk about it next appointment. I’m so scared.
Quick back story: On November 29, 2021 my healthy (by all accounts) and lively boxer boy had a cluster of grand mal seizures with no prior history of them. The MRI found a swelling/mass in his brain that the doctor is *almost* positive is a glioma tumor based on symptoms, age, breed, etc. Small chance it could also be a stroke like event because he was under anesthesia earlier in the day. We opted to not do radiation or follow-up MRIs and decided to treat him palliatively.
Fast forward 5 weeks later and he's doing pretty well on a cocktail of Phenobarbital and Prednisone. I'd say he is 95% back to his old lively self. This could go south at any time but we are just happy to still have him around because I was sure he wasn't going to make it a month ago.
So here's my problem I guess? His medicine makes him crazy hungry.
Pre-illness, I typically fed him about 4 cups (per the pkg for his weight) a day, split over 2 meals. Post-illness, that was no longer enough for him and I found him eating his poop and constantly begging.
So I switched to feeding him 4.5 cups over 3 meals. That's still not enough for him apparently, and with the bonus side effect of him barking and crying for food all day long because he expects food in the middle of the day now.
I am torn between wanting to train the begging out of him (and watching his weight) or just giving him all the food he wants because he's a good senior boy that may not have long anyway. More walks isn't really an option because he also has arthritis and can't walk very far even before this all happened.
What would you do?? Anyone have any low calorie filler food suggestions that I could mix into his food? I tried carrots and he just spits them out.
Thanks for reading!
My(27) mom(47, breast cancer w/ mets to spine) was admitted to the ICU one week ago with pneumonia, a fungal blood infection, respiratory failure, altered mental state, kidney failure, and blood clots (which quickly resulted in gangrene of her hands and feet, requiring amputation.) She has been on a ventilator this entire time, so mostly heavily sedated. When she is awake she can open eyes and shake head yes or no to questions. On third day, they inserted a feeding tube.
On Wednesday the hospital called for the whole family to come in for a meeting and to see her. Because of COVID, only one visitor is allowed per day except in the case of a patient where death is likely. So we knew this was not good. The doctors informed us of her condition and advised that we had the options to move forward with aggressive treatment, or move her to comfort care.
They all went with the "she's a fighter/miracles happen/do everything you can" route. I did not agree, but couldn't bring myself to say that to the 10 of them. Doctors reiterated multiple times that she is very weak and this treatment is rough. Also stated that even if there was a miracle, we should consider her quality of life. They said things like "oh there's plenty of things out there that help with mobility" and "she's a strong woman." I was intensely internally smacking my forehead. In the last year she's gotten progressively weaker, more tired, constantly in pain, fractured her spine from aggressive tumor growth, constantly sick from radiation, sick from her cocktail of daily pills, developed diabetes, has been suffering from lymphedema....and so much more... and still she was just nonstop on the move all day every day because she told me she was afraid of resting - afraid of going to sleep because she might not wake up. A nurse at one point started upping her pain med IV and sedation, and she started shaking her head no as hard as she could. Through yes or no questions, she indicated to the nurse that she was afraid to go to sleep. That killed me. But it was also on the second day, when she was better. They said the blood thinners were relieving the clots, antibiotics were improving her infection and they turned down ventilator support. I actually thought she might get out of hospital with just amputations... On the fourth day, she communicated to us that she was ready to go to sleep.
Yesterday morning the hospital called to say she had developed internal bleeding, and they are not really able to no
... keep reading on reddit ➡Hi all, when in your experience is the best time to begin a relationship with a palliative care doctor?
I was chatting with my wife’s coordinator at UCSF and she mentioned it may be beneficial. My wife was diagnosed 6 months ago, GBM, clear scans since resection, on her 4th? cycle of temodar, using Optune with 90% usage. Should we wait till reoccurrence or do it now while she’s still in good shape (all things considered). Any regrets not starting it earlier?
Thanks for your support and all the great info here.
I've been interested in hospice care for many years, long before I found OT. Before my career change to OT, I started a couple of small companies, and I'd like to carry that same entrepreneurial spirit into hospice. However I do need to make sure it's the right move by ideally working for a someone else first.
Has anyone here worked in that capacity as an OT? I have called around to some local hospice agencies around LA where I live, and I'm not hearing much in the way of OT representation there.
Thanks!
I am a canadian anesthesia resident interested in palliative care. I am wondering if anyone american or canadian knows of a palliative care team/elective that runs with a large anesthesia presence.
As in palliative epidurals and nerve blocks. At my site no anesthesia have done palliative and no palliative pts ever get regional anesthesia.
I’m in the middle of my internal medicine residency and am trying to figure out if palliative care is for me. Besides connecting with patients and helping them feel better, palliative care has been the most rewarding part of residency so far. However, I’m not sure if I’m a good fit. I’ve been a quiet person my entire life and have been told to be more outspoken, most recently in residency. I’m also tired of academics and tired of always being judged and just want to work and move on with my life. My plans currently are hospital medicine, which I thoroughly enjoy at my facility. However, I keep wondering about palliative care as well.
Edit: Thank you all for your replies. I haven’t seriously thought about a fellowship before but now I need to since application season is coming up.
Today my baby August was found to have a large 2cm (a bit less than an inch) tumor. I took him into the emergency room when I realised he was rapidly losing weight. They could not see if the tumor has spread because of bloat, and his blood pressure was not good enough for them to feel safe doing any bloodwork. The surgery would be risky, and even if it would succeed there was a high chance that August would pass away a few days after from pain after the complicated procedure. His blood pressure also indicated he does not have a high chance of recovery. I decided to make the difficult choice to simply give him palliative care and not proceed with the surgery. Except for the weight loss, he currently has no other visible symptoms. He runs around, he eats just fine, he comes when called. I got medication to keep him comfortable and pain free until he no longer has a good quality of life. I don't know if that will be days or weeks, but I'm trying not to focus on it and treasure every moment he's still with me. Mostly, I just wanted to share this experience, to know I'm not alone. Also I want to know everyone's opinion as to what I should do after my piggie passes, leaving his half brother alone. What would be my options? They're both 4 and a half years old.
Tw. End of life, cancer
This will probably be a rambling mess.
So I've been lurking here for a while, sharing little bits in the comments and had been working up to write a post. MIL has terminal cancer. It dominated our lives when we first found out several years (yes, it has been going on that long, yes theres been times I thought it was just Christmas cancer. Confirmed it years ago its not, she just has gotten very lucky with treatments) ago and almost destroyed our marriage, until DH was able to pull back and realize that she was escalating her toxic behavior and using it to control everyone around her.
DH just got the call to get to his mums for potentially last goodbyes. They said he could wait a day but they wouldn't recommend delaying more than that.
I have no idea how to help him, he has no idea how to feel.
MIL is a garden variety manipulator, an expert in triangulation and a perpetual victim. She is also loving and generous. DH has only recently really been coming to terms with the damage she has done to him and his siblings.
I feel like I'm sending him into a war zone. All his 6 siblings will be there and he wasthe perpetual mediator but since we dropped to LC and stopped playing her ridiculous games he has been forced to the outside of his own family because everyone has been conditioned to keep the boat stable. His brothers in particular can get incredibly nasty and are experts them selves in the head games.
He'll be 4 hours drive from home and I can't go with him. He wants to go. What can I do to help him prepare?
Hello- how does everyone feel about palliative care? Anyone doing it? They are recommending it for my dad, I’ve read up on it some and it sounds like a helpful thing.
He had glioblastoma, working in rehab to gain enough strength to get home and do treatments. He was in acute patient rehab but isn’t able to keep up with the amount of therapy there so looks like we have to move him to skilled nursing rehab.
My Dad became jaundice just over a month ago. Spent nearly 3 weeks in hospital waiting for a procedure to remove what we thought was a hall stone. They ended up putting a stent in.
Last night we had a consultation with Hepatologist, for what I thought was going to be news on his bilirubin levels, to be told that he had an aggressive/untreatable form of cancer. Prognosis is months at best. We are waiting to now speak to an oncologist and a dietitian.
What I can’t wrap my head around, or find details of online, is why this doctor has said that palliative care may not be an option for him as he’s still jaundice and his bilirubin levels, despite the stent, have not changed from 2.7. I’m not sure I follow to be honest. What does being jaundice have to do with it? Has anyone heard of this? Can you explain it to me please?
Thanks
Hi everyone, I'm really hoping you could offer any perspective or experience related to this issue.
My mother-in-law has been in the hospital for about 10 days with advanced dementia. We brought her into the hospital following her return from a short stay at respite care - she is normally nonverbal and requires significant physical care, but it was different - very difficult to wake her or give much food or drink to her.
She went in to the hospital able to eat and drink minimally with assistance. The doctors thought she had an infection and she was given one course of antibiotics - the antibiotics were stopped prematurely and the infection returned. She was then given a second course of antibiotics. Now the infection seems reduced and under control, however she seems to have lost interest in eating or drinking.
The doctor feel that her dementia has progressed because of delirium from pneumonia and the infection. He believes that she has lost her swallow reflex and it will not return due to her advanced dementia. His recommendation is to move her to palliative care immediately and is not considering anything else to prolong her life. When discussing a feeding tube, he feels they can be uncomfortable and since her illness is terminal, there is no sense in putting her through the discomfort.
Our question is whether anyone has experience using feeding tubes with advanced dementia patients? Is this common? Is it morally questionable or wrong to use them for patients that do not have an ability to communicate their discomfort?
We would truly appreciate any and all input. Thanks so much.
94 yo old female. Osteoporosis. No smoking generally good health. I think no meds (she's a vitamins & castor oil kinda ladyl
5'0 110 lbs
General good health but problems hx edema and falls & walking problems..and well, getting old...& she had COVID break through a few mos ago and was moderately sick.
This is what I know of the surgery:
1)
The top of the femur is broken in several places, and the top of the femur that needs surgery is located the part
Of the femur that goes into the hip bone or area.
2)
They will be putting a steel rod into her leg to help the femur heal. They will be making 3 or 4 small incisions in Mom’s right leg to do this.
3)
There will probably be a long period of rehab after the surgery.
I'm not asking anyone to have a crystal ball.
I've heard from friends that hip surgery at her age (anything past 85) usually ends in death because the patients cant heal well and cant do the PT my aunt is referencing.
Does anyone know the statistics and percent?
How is it that hip fracture is deadly...what happens?
I also hear general anesthesia becomes riskier the older you get...how risky? How many people her age die in surgery?
My Aunt kind of lives in an alternate reality (mental health) where VOCs,Vaccines, nose ulcers are a Disaster but Covid and Spine fractures and such as this are NBD.
She is managing this and is the only relative in the state.
Not sure how long she will live could be weeks or more
Hi rabbit family,
I have an elder bun who has a mass which is likely cancer. I am leaning toward palliative treatment.
Do you have any experience with the progression of cancer in a rabbit, and experiences with palliative care?
I am in touch with his vet. They are recommending prednisone, which I was considering at first, but lately have grown wary of due to its side effects and the experiences of friends who have treated their pets’ cancer with prednisone.
Thank you so much for any experience/help. I am worried for my boy and am trying to do my best for him.
My mother was given days but it’s been 2 weeks on palliative care no food very little fluid intake constant morphine.
Today she wanted breakfast?
So my dads in palliative care at home, unfortunately the palliative care nurses here don't do much besides call every few weeks to see if my dad is still alive.
The problem is, I think my mums not dealing with it well, she's the main carer of my dad, and overall I don't think its a huge amount, but it is quite a bit of work of course. The problem is my mum really digs in the complaints constantly, she talks about how she's had to look after my dad for years (due to a previous health issue 9 years ago), how she's born to have a bad life, and tells my dad off all the time because he wakes up at 3am. He also kind of humiliates him a lot, like laughs saying "well at least you didn't ... your nappy" or whatever.
Initially my dads mind was really gone, sleeping 90% of the time, but the thing is, my dad seems like he's somehow getting better, he was meant to have 4 days to 4 weeks to live, and its been 4 months now and he's able to stand up on his own, walk a bit with a walker, eats heaps, and memory is coming back a lot too.
But as you can imagine getting told this stuff from my mum is getting to him especially with his mind coming back, he's feeling like he's a waste living there. Honestly if I was confined to a chair/house hearing that all day, I would honestly kill myself.
I think its because my mums exhausted and lack of sleep. But every time I try to tell her, I can sit with my dad for 4-5 hours, or maybe we can look into carer support or whatever, she automatically shuts it down. She's also constantly trying to do housework and stuff not even required, like she tries to spend hours fixing the fence, its not even broken, but then she complains that she's so busy dealing with dad and fixing the fence. And its like well don't do it, none of this house stuff is required, we can find time ways to make it easier, but she refuses. Its like she wants to be the martyr all the time, to tell people she's done all this stuff but its just getting to my dad worse and worse. He feels like he's dying and leaving just hurt around.
I don't really know what to say or think or do anymore, I don't know, sorry for the rant, things just suck. Not sure if anyone has any advice? Would be great. Cheers.
I’m working on a capstone project (somewhat following the ACP work of Rebecca Sudore) that will improve the nurse admissions navigator. I’m hoping to streamline assessment of ADs, including a prompt to revisit documents older than 6 months, as well as include some pre-planning questions that will provide an opportunity to update patient values with each admission, creating a link to a sort of “living document” that providers (likely palliative) can reference to facilitate goal-concordat care.
Have any of you worked on something like this? What did you do to improve this process? Or do you already have an Epic solution at your workplace that you find especially effective?
Appreciating any and all input about this, especially those willing to share screenshots of their current navigators (without sharing Pt info, of course). Thank you in advance!
- I wish I’d had the courage to live a life true to myself, not the life others expected of me.
- I wish I hadn’t worked so hard.
- I wish I’d had the courage to express my feelings.
- I wish I had stayed in touch with my friends.
- I wish I had let myself be happier
By Bronnie Ware - https://bronnieware.com/regrets-of-the-dying/
I finally landed my dream job of being a hospice and home health nurse. There are some days I feel like I could obviously do better but I truly feel im making a difference helping families and their loved ones who are the patient. I was wondering if there’s any benefit besides knowledge gained getting my CHP and other credentials in the coming years since this is the field I want to focus on? My main goal is to run my own assisted living one day so I know that would help me further my career as well. I see some of my fellow classmates get their RN II and III and so forth and I want to be able to move up the ladder, but I also want to know why it’s helpful if at all.
My 85 yr mother with vascular dementia has gone into a dramatic decline since being admitted into hospital after a fall 4 weeks ago.
She’s gone from a talking walking continent woman to losing it all to being bedridden and delirious.
She suffered no broken bones but she had a chronic colonic pseudo bowel obstruction. It’s caused her to have a dangerously dilated bowel at risk at perforation. Her stomach has been distended like 9 month pregnant woman for so long.
Her bowels are not working she’s refused meds and olive oil enemas can only do so much. It’s end of life care now she’s been discharged tomorrow morning to go back to her nursing home. I’m thankful she is going back quickly as I do not want her dying in hospital
I’m seeing her tomorrow to say my goodbye hold her hand tell her I love her.
My mother has been abusive to me all my life I was taken from her in my early teens into foster care. I made a life for myself and kept in contact with her despite her showing absolutely no love. She is a covert narcissist so I’ve suffered a lot of her coldness.
I’ve done all I can for her as her POA, fought off scammers bloody vultures, sold property, fought lawyers who didn’t do the right thing for her, found her a great loving home and made sure she had a nice room and best care. But she remained bitter angry person.
I still feel I’ve not done enough and now it’s too late. I’ve lost my dad my only sibling and now my mother. It’s just so so heavy - you know that heavy feeling you get in your being cos you know you’re losing someone and you can’t shake it off?
I’m so scared of what I’ll see on Sunday when I see her I intend to be kind but not knowing how she’ll be I don’t know what to do for her
How do you comfort a porcupine? One that has hurt you deeply but they are still your DNA
How quickly they can decline I just am numb
“Women also spoke of this regret, but as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence."
https://amp.theguardian.com/lifeandstyle/2012/feb/01/top-five-regrets-of-the-dying
I was in the ER one time and they sent in Palliative care for me. I did freak out a little bit because I didn't think I was that far along yet, and I would have liked someone to give me a heads up first!
But then they said that Palliative care was to alleviate pain, not necessarily end of life care and I exhaled so hard. (Of course now I'm in Hospice, so it's a little different.)
Does it bug you to be confused for one thing when you're not? Or do you maybe see it as a way to get some quick explaining in so people understand better anyway?
here again
Stage 4 esophageal cancer. Mom hadn’t had a good bowel movement in moths, after several laxatives, Fleet, Senna, she finally had one, this is when it got bad. She had diarrhea and was able to get all of her poop out. The consequences on that was she hasn’t been able to hold much of anything down, she was constantly throwing up,( on a saturday) Monday i made the call for a nurse to come , they said it would talk a few days for things to get back to normal to eat only what she can tolerate blah blah blah . It’s been about 2 weeks since then and she’s lost a SIGNIFICANT amount of weight she’s in the high 50’s and no there isn’t a 100 in front of those pounds.
She hasn’t done her treatment ( immunotherapy since like june ) , She didn’t go to her appointment for her MRI to see if it spread or not. Shes literally skin and bones and wants me to call her doctor to let her know she’s ready for treatment but my God i think it’s to late. She not able to tolerate a few spoons of broth, jello, apple sauce gets stuck in her throat literally NOTHING without throwing it up, or throwing up in general. She can do small sips of water and Gatorade, she had 30ML of her peptide ( High caloric) via Tube , and took her pain meds an a hour after and threw it up. She’s sleeping a lot , agitation at times when talking, she’s up for a few and down most of the time. She’s uncomfortable in her big comfy bed, she’s scared to step foot in a hospital because she knows she’ll be admitted. Not to mention i believe it’s spread to her liver due to her having constant pain and a lump that comes and goes that initially started on her right side , now it’s on the left and in her back as well.
I just saw a post on Twitter from a friend of his, and about the challenges palliative care patients are experiencing right now as Covid takes over the hospitals. Dr. Hollis was a great instructor when I had him a couple years ago. This is such sad news.
https://preview.redd.it/3nmswfyorbo71.png?width=1076&format=png&auto=webp&s=4c1b01896f6d89d2b0f85b904faaadb027088345
Hello all, I'm a new grad nurse. I've been working in med surg in hospital now for about a year and two months. 10 months of that was as a PCT and four months of that is an RN (currently still in med surg, I plan to try to go PRN if I get this hospice job).
I'm so grateful to say that I have an interview in a couple days for a hospice RN position at a hospice facility, yay! This is my dream job. ♡
Any advice on how to prepare for the interview? What type of interview questions to expect? Advice on how to make myself stand out? Any questions I should ask the facility about the job? Signs of cons vs pros to look for at the interview (meaning like red flags or green flags of a good work environment, etc) ?
Thanks in advance!!
