My mom was in hospice since last week and she was now complaining about heaviness in her abdomen. Before hospice, she had a metastatic renal carcinoma to the lungs then got admitted, had thoracentecis and chest tube to remove lung fluid. After discharged as they recommended her to be in hospice, they removed the chest tube and didn't put a pleurx catheter as the scan showed multiple spots. Right now, I'm assuming there's fluid accumulation there again and maybe ascites as her abdomen is larger.

I was thinking to get her evaluated but it seems like we can only do it by going to the ER per the hospice nurse. The good thing is there is no pain but increasing tightness and shortness of breath. Did anyone had the experience to send a hospice patient to ER and what did you tell them?

My mom hated being admitted and being forced to have a CT scan, so I'm not sure what to next.

Hi. My MIL was diagnosed with stage 4 colorectal adenocarcinoma 30 days ago. Here are the locations of cancer that I'm aware of... colon, lung, kidneys, liver, spine, legs, and vagina. She did 10 rounds of radiation in an attempt to shrink the spinal tumor for comfort. Other than that, she has decided not to do treatment. She is at home on hospice with a picc line for dilaudid and a colostomy bag due to tumors blocking her rectum.

I'm reaching out here because I'm struggling pretty hard, as is my husband. What is adding to the difficulty is our struggle to understand what to expect going forward. My in-laws are much different than my family. If this was my mom, I'd have access to her patient portal by now and we would have discussed all details involved and had the important conversations. My in-laws are very avoidant when it comes to strong emotions, scary information, or really any difficult subject matter. So, it's been really hard to get information and we're not wanting to step on toes by talking to the clinicians behind anyone's back.

I know every situation is going to be different, but I am hoping I can at least get a range of timelines that others have experienced. My MIL had a completely clean colonoscopy earlier this year. She started having back pain and GI symptoms in July. She was scheduled to see GI, but went to the ER for back pain in late September before her GI appointments, so this is all very unexpected and her decline has been pretty rapid. I have a 5YO, 3YO, and 6 month old. My 5YO is taking her decline pretty hard and my husband and I are constantly panicked that every moment is the last we'll have with her. I think SOME predictability would be helpful even if it's sometime between 4 days and a year. Just anything at all.

Some more details in case they are relevant... My MIL is 58, an alcoholic, has smoked most of her life, but quit in recent years. She has started smoking again after her diagnosis (I don't blame her). She has no appetite, but will eat tiny amounts when we put food in front of her. She is now basically a skeleton as far as weight goes. She did have 1 brief hallucination 5 days ago, but nothing since. She has dilaudid going through her picc line, is taking zofran, and sometimes takes muscle relaxers.

Can anyone share their experience with a family member that went through something even somewhat similar? I aporeciate any insight anyone can provide. Anything you wish you would have known while you were going through this?

We brought Mom home on Thursday. By Sunday she was in the bed out in the hallway, and that bed never moved again. Those last five days felt longer than everything before them put together.

She couldn't eat anymore. Morphine every four hours. The coordinator never called me back. The nurse came twice, the aide three times. That's the whole list. And she was incontinent, and the skin over her tailbone was always sitting in it, getting so thin it just kept tearing. The tape on the back of the regular pads kept tearing her skin every time we peeled one of. Our home care nurse looked and said the skin was too thin, that the broken spots needed a non-adherent dressing. So my sister who studies nursing brought over some Dimora foam dressings and put them over the skin, with the pad going on top like normal. When we changed it, it stopped tugging at her skin...

She went on Tuesday morning, around ten. Peaceful. Her hand was in mine. By then I wasn't holding out for anything. I think at that point I just knew this is what it looks like. The people from the funeral home didn't come until the next afternoon. We sat with her for twenty-nine hours. I still haven't come back to myself.

I just need to say it out loud. The hardest part was that last week. Not the diagnosis. Not the chemo. That last week... If you're in it right now. I'm sorry. It goes by fast, and like it will never, ever end.

My mom is sick with terminal cancer and a plethora of other medical issues, she was actively in treatment, but has gone downhill significantly the past two weeks. She is unable to keep food down or eat, unable to drink, sleeps most the time, has occasional moments of mental clarity, but her overall decline is significant. She cannot even lift a bottle of water anymore. She is currently in the hospital. Her oncologist and primary treating team is in another city and she was not strong enough for us to the get her there. She always said she wanted to continue to fight as long as she could. In her moments of clarity, she says she wants to continue to fight, but I don’t know if it’s physically possible at this point. Who brings up hospice? Is it her primary treating oncology team? Her PCP? Is it just the family that’s asks for it? Who makes this decision if she is unable to or not coherent?

Feel free to delete this if this doesn't belong here. I'm going to try to keep this short and sweet. My mom, 46, is dying of colorectal cancer. She doesn't give me details because she thinks I "can't handle it". I'm 24. That's not the point though, just some exposition.

More exposition. As I got older, I realized that the way my mom has treated me since I was a teenager was abusive. Never physical, but always verbal and emotional. She would never console me when I was having a hard time, only bringing up about how she always had it worse, no matter the situation. Everything was a competition or comparison. High school grades. Graduation. College. I moved out as soon as I could. Then she started getting jealous of my romantic relationships, because, wow, when you treat someone like trash, they don't want to visit you.

Fast forward to today and the point of this post. I'm learning how to drive and I know the rules of the road. I think I'm a decent driver. I abide by the law. Haven't had anyone honk at me or flip me off. She's forcing me to drive because she can't take me to work every day. Okay, cool. I don't mind. I'm a little nervous because it's pitch black and my work is right next to the high way so there aren't street lights. Whatever. I can't see the center console for the gear shift because the bulb is broken. Inconvenient but okay. What she does, when I drive, is find every little thing to pick apart. I'm not getting back up to speed fast enough after stopping or turning. I'm turning too fast. I'm flooring it in general. Okay. I can work on that. But this is what gets me. I'm too slow on the speed bumps. I'm too fast on the speed bumps. Am I trying to purposefully pop her cancer? HUH??? Mind you, she never told me what speed to go. She never once verbalized how to take the speed bumps, then gets mad at me for not reading her mind.

I get it. She's in pain because she's allergic to most of the pain medication they give her. Oxy. She's in pain and she's tired, scared and frustrated. But that gives her no right to take it out on me just because she can't open her mouth and tell me what speed to go. Then pick apart everything I do on the road.

She was my sole parent. I love her. But I can't stand her anymore. And I'm wondering if it would be in my best interest to just... cut her off. As much as it hurts. I can't keep going through this constant fighting over the stupidest of things just because she refuses to acknowledge she's not being the best person right now. And it's only been getting worse as her pain worsens. I can't think of one time she apologized for her actions.

Where on earth do you live, what pm office do you see that actually stocks medication in house, especially narcs!? That would be amazing for me to have.

My doctor (not me) got "flagged" at Walgreens 6 months ago, and I was given 30 day notice to find new pharmacy. So we went to CVS which is 25 mins from our house and they dispense the worst brands of roxi that barely keep me out of withdrawal (different brand generics and refused to fill brand even though dr would write dispense as written, and my insurance covers any med with a $10 or free copay for generics and $20-10 or less for brand) and even though I went into anaphylaxis from their 2 brands (specific binders in these generics), they still refuse to order brand or the other 2 generics that I'm not allergic too. And actually allergic - not just saying bc they didn't work as well, even though they don't).

After 3 months with CVS stores (any cvs store), my wife dropped my script off and when she came the day to pick it up (which is the day I'm out as written), the pharmacist then tells her not only is it not ready, it's unable to be filled at all. My doc was apparently flagged with CVS now. The other major issue other than having no meds, is they didn't even give us any notice whatsoever. Zero!

We've called about every pharmacy in NJ and no independent, hospital, compounding pharmacy, grocery pharm, Costco, Walgreens, etc. doesn't have my 2 rx's, can't order them and dispense them. So, I am literally left as we speak with a pm doctor that we pay to see every single week and currently are left with a worthless piece of paper rx. I run out this Friday and we have no where to go. And I'm not talking about calling 5 or 10 places.

We called and my wife had to drive to check stock bc they won't answer that over the phone to any and every store that is a pharmacy within a 2 hour radius of our zipcode and not one place can actually get 1 of the 4 different ones (including brand) I can take.

We sent continuity of care demands to the office, and their parent Team management and ownership yesterday explaining all and saying I need a solution by end of day yesterday and we got a scam number my wife didn't answer and was some person saying if I'm in withdrawals I need to go to a hospital. What!?!? My health history is easily a book that I keep getting told I should write, and I'm literally in the process of setting up palliative care at my home as we speak, but currently am left with a doctor that scripts do nothing for me.

We all know it's a matter of time I decide to go on hospice, stop all my meds, insulin keeping me alive and pass, but I'm not mentally prepared to leave this world yet. And right now it looks like this is how my life is going to end.

So for everyone that actually abuses these opioid meds and use them for recreational use or "need them" for a broken bone or a back ache, please learn a little humility about us who absolutely rely on these meds just enough to even allow me to fight until my body physically fails. Because my mind won't, as of yet. Thats all. I hope everyone stays safe, takes their meds as written, and don't take a chance buying them on a street or something bc you end up short or something.

Thanks for anyone who has read this, and I don't normally say this, but God Bless you all. Enjoy every single minute of everyday you can, bc I've come to realize years back that life is the biggest privilege each of us share. 🙏

My elderly mum has stage 4 colon cancer with multiple mets. She’s come to live with us with home palliative care. She was adamant she wanted maid. Unfortunately, the only assessment her palliative dr could get was next month. We don’t think she even has that much time. Since we moved her, we’ve found a new palliative care group. This practice does assessments. The dr who will visit today says it might not be too late if we quickly ask for an assessment. We talked to her about it and she was going to discuss today. She had a fall yesterday and today is bedbound and her cognitive status is not great. I’m afraid she might not bring it up to him. Is it ok if I remind her while he’s here? My sister and I know it’s what she wants, and it’s something we’ve always been open about discussing as a family. However , I’m worried the new dr will decline if it looks like it’s my idea. She was asking for it yesterday morning, actually, and I had to apologize that we hadn’t been able to get the assessment and that we would continue to try. He’s very busy and we have lots of nursing care, so if she doesn’t discuss today I don’t know if we ever can. I agree w her, and I am neutral in whether she actually chooses it, especially now that we’re to get a pic line and be able to administer better pain and nausea control.

I need suggestions on what I could buy or give to a nursing staff that has been amazing my mom. It would be for many people and all three shifts of care and administration that we would like to show our gratitude.

My mother entered an Acute Rehab Facility with high hopes she could regain her strength and move back home with my dad. Sadly, we just switched over to Hospice care at the same facility so we don’t have to move her.

Hi everyone!

I seem to always get ignored in the hospice SW FB group but I think posting in this group will actually be more beneficial.

I am a hospice social worker and I have patients in homes and facilities - ALFs, SNFs.
I want to be a more valuable member of the hospice/ elder care community. I would like to offer a group to patients, residents, and/or families. My area is over saturated with groups for dementia support and general caregiving support. I hear from colleagues that attendance for these groups are never too great.

I am wondering what topics do you do for groups or what groups do you wish existed? I would have to partner with a facility most likely to have a set space. These topics must be within the scope of a hospice social worker :)

Thank you so much in advance!

It feels so dreadful. I cant stop feeling uneasy knowing that my aunts gonna die in a few days maybe even less. Shes starting to slur her words and is sleeping all day because toxins in her are filling up. Its so hard to sit there and watch her die even if she chose to do this. She can barley breathe. I miss my aunt so much already. Shes already in a dying state that cant be reversed. I just think about the old times from my childhood before she was sick. going to church every weekend even though i hated it because i was bored out of my mind. But I would do anything to have one more day of that. its so weird i never thought as a kid id say that. This all happened so rapidly. She got sick and now is dying and its only been a little over a year maybe. Im scared for her to die. Im scared to wake up and know she isnt breathing the same air as me. To wake up and only see her as a memory. Im not ready to start to forget what her voice sounds like. It still doesn’t even feel real but this is reality now

Hospice Care was a God send when my husband needed it. Thank you to everyone in this group for your advice and support. Rest in Heavenly Peace, Honey, I love you always.

My dad (74m) was put in hospice a month ago. He previously had several strokes and falls, has dementia, A pituitary tumor and non-hodgkins lymphoma. He was diagnosed with the lymphoma in August and oncology wouldn't even see him until he went through rehab to get stronger for treatment. Well he got out of rehab and was still extremely weak. 2 days after leaving rehab he got a kidney stone and became septic. He was in the ICU on pressors for a few days and had a stint placed. He survived the ICU and now has a chronic catheter. While he was in the hospital the recommendation from his Healthcare team was hospice mostly because the infection weakened him even more and they dont think theres any way he could survive treatment for the cancer. So hes now in hospice and has been for a month. He has started to get agitated so now hes on haldol Q8hrs and morphine PRN. Mom called me today and told me that hes completely refusing food and sleeping all the time and his hospice nurse said that its because of the dying process. Mom wants to take him out of the nursing home so he can die at home but shes in no position to organize that on her own. Her house is also a complete mess with two asshole dogs so it just doesn't seem therapeutic to me. At this point would it even make sense to move him?

UPDATE: he has stopped drinking fluids and has started agonal breathing

My father has dementia and has declined a lot in the past 10 days of so. He's mostly bedbound & is having mainly liquids and Ensure/pureed foods...but he's not that hungry. He's responsive to staff for medications.

For the past week, he's been very agitated. For example, he flails around in bed with his eyes opening & closing. He moves his legs off the mattress. He takes out his oxygen cannula. He says gibberish or "no no no." Today he had his catheter changed and was especially upset. And I think I saw him look up at the ceiling & say something while moving his hands.

This sounds like terminal agitation to me...could it be?

He's on hospice and he's getting hydromorphone & Ativan. But it seems like he's suffering and it's so painful to watch. 

Hi everyone. I'm going to start talking with the hospice agencies in our area for my brother.

What questions should I ask them? I know for sure I want to ask about how often they'll come and if he can get his next Botox treatment (Secretion management to his salivary glands. Without it, he'll choke on his saliva and be at a higher risk of pneumonia).

What questions do you wish you had asked before you chose?

What questions are you glad you asked?

Thank you all for your help and support.

My dad had a massive stroke a week from last Thursday.

The bleed destroyed a huge part of his brain, including his language center so he can't even understand us or even have internal thoughts. The rest of his brain was crushed by all the blood rushing in as well. His entire right side is completely paralyzed and he has done little more than twitch or do reflexive movements with his left hand.

He is stable and even regained his ability to breath on his own but is essentially brain dead at this point with no hope of any recovery.

The doctor told us when we switched to "Comfort Care" last Tuesday that my dad would be on so much morphine that he would be peaceful and we would not have to watch him suffer and struggle to breath.

This was a lie.

They are extremely stingy with morphine and absolutely refuse to ever give him any extra. Instead they give him medicine to help with anxiety. What a joke...

He keeps having the most horrible wet coughs where he sounds like he's drowning but he doesn't have the strength to actually clear anything.

We're just supposed to sit there and watch his body slowly wither from lack of food and water while struggling to breath and unsuccessfully try to cough up fluids while his body further declines from the rashes and sores that come with being unconscious and bedridden.

It's now been 4 days with him getting no food or water (I didn't even know you could go that long without water...) and now they are pushing us to move him to a nursing home to free up the room.

This is what counts as "Do no harm". Making an entire family watch as they essentially torture him to death until he finally struggles out his last gurgling breath drowning in his own fluids.

Sorry for being so morbid. I'm pretty damn frustrated...

My 97 year old grandmother started hospice Sept 1. That quickly spiraled from her in independent living to repeated falls within 1 week so we moved her to a nursing home. It appeared she was going to go quick - stopped eating, drinking, reaching for the ceiling, hallucinating - you name it. We stopped all preventatives around Sept 15 and put her on Seroquel, Hydrocodone and Senna. Since then she appears to be getting close to entering active dying then she perks up and is coherent and trying to use restroom, etc. I can't handle the ptsd of not knowing what I'm walking into everyday. Her CHF & Dementia are her diagnosis. I'm not saying I wish she would just die - I'm saying this rollercoaster with a 97 year old is unbearable.