I'm literally begging for my mother's passing. I know how horrible that sounds. She doesn't *want* to die because I'm killing myself keeping her alive. For what? She's miserable. In pain. Unaware of how close to death I am. I'm miserable and hospice as a single caregiver is absolutely traumatizing.
My parent was sent to Hospice a week ago after choosing not to continue treatment for brain cancer. They were not taking any meds in hospital. After about a week in hospice they decided to start taking their parkinsons meds so they could eat a little. The hospice said they no longer qualify because they're taking meds and eating and sent them home.
They are bedridden and unable to care for themselves. Since stopping the brain cancer meds they are also increasingly confused and combative. the care aide only cooks and cleans and is there to call 911 in an emergency, and doesn't do any nursing, and is about 6 times the $$ compared to what their social security is and that is only for a partial day.
Everyone needs to work, no one can afford to take off time from work. We tried contacting medicare and a social worker, and the hospice. No one seems to be any help. Not sure what the next step is but they're going to end up being alone for hours a day and I'm afraid of what can happen. Their social security is above the medicaid limit. Their only income is SS. Any suggestions on how to navigate the system quickly? She has a house, but we would have to get a conservatorship and figure out how to pay for assisted living while we were trying to sell it. They are no longer of sound mind to sign off on a conservatorship. And no one has the $$ for a lawyer to help. We're stuck in that place between too poor to afford anything and not poor enough for the government to help.
My mom passed after 8 months of home hospice care. I stayed by her side the whole time changing sheets, holding her through the pain, and giving her what strength I had. This poem came from those hard days and nights. I just wanted to share it.
"For You and For Me"
Hey Mom, I miss you, and I wish I could’ve fixed you, The weight of your absence is starting to hit. Now that you’re gone, I can’t help but wonder, If I missed a moment or failed just a bit. Eight months I held the watch by your side, I miss changing your sheets and the things I didn’t want to try. I miss us talking of all you’d like to see, Not realizing those dreams would never come to be. I gave you my strength when your pain came like the tide, Could I have fixed you if I had more time? I can still hear you calling my name While the guilt whispers loud, wasn't it making me go insane? Yet I stayed through the nights, exhausted and sore, I just figured you'd always be there when I opened my door, Watching the kids love you, sickness ignored I couldn’t change tomorrow or settle the score. I couldn’t change fate or make the pain flee, But I held you in love not just for you, but for me. Rest now, dear Mom, where the suffering ends, In whatever comes after, where time finally bends.
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.
My mom is still alive, but we are in a death watch. The nurse went into my cabinet and started to collect my mom's hydrocodone bottle. She said since she wasn't using it, she was going to take it away. I told her she is still using it along with the morphine, and showed her the documented dose and time that I keep for my reference. Is this normal? This just doesn't sit right with me.
Edit: To be fair, she did have a bag with kitty litter in it. I understand now that that is one of the ways of disposing of meds, but the way she was going about it was way out of line. For all I know, she was going to dump it in the kitty litter and haul them away. Or maybe she would have put dish soap in it. Whatever the case may be, it was not the correct procedure.
I've been working in adult hospice care for a few years and recently accepted a position with a team that covers pediatric patients. It is a different world in a lot of ways and I want to make sure I am prepared on the clinical side before my start date.
My current BLS cert is up to date but my new employer mentioned PALS and I realised I do not know what the PALS certification requirements are or how different the process is from what I already have. Is it a full course from scratch or does having current BLS mean anything toward it? And how long does the certification process typically take for someone coming from an adult care background?
Any guidance from people who have been through this transition would mean a lot.
My mum has terminal CNS lymphoma with multiple brain tumours and I’m struggling to understand where we are at now / whether others have experienced similar trajectories?
I know nobody can give exact timelines and I’m not asking anyone to predict death, I think I’m just looking for experiences from people who’ve been through something similar because I feel really lost in limbo. The anticipatory grief is really difficult.
My mum has had cancer on and off since 2018. It started as non-Hodgkin lymphoma, then CNS lymphoma with brain involvement and several tumours on the brain. She had so much treatment over the 8 years but in October 2025, we were told that there was no treatment options left. Doctors gave a prognosis of ‘a few weeks, maybe a few short months.’
We are now approaching 8 months later.
Throughout previous cancers, nurses/doctors would often comment that she wasn’t like most patients they saw.
She has always been:
• extremely active
• unable to relax (reading, watching tv, hobbies like sewing or colouring to pass the time was always a categorical no)
• hated sitting at home
• constantly on the go
• very appearance/clothes focused (huge pride in outward appearance)
• mentally restless
• someone who pushes and pushes through everything
• unable to physically sit still
We found October/November she did seem different. Initially she was very agitated and angry, she decided to stop her steroids (obviously discussed with her doctor) and strangely once they stopped, her mood improved slightly - not positive, just less angry. She seemed more tired and would appear quieter but come late December to late March, whilst she wasn’t by any means okay or ‘herself’, she certainly seemed to regain some strength. She basically just wanted to be out walking constantly, couldn’t tolerate being at home unless it was for sleeping at night and would almost force herself through things physically.
But in the last few weeks there has been a very obvious decline to those of us who know her well (began late March and week on week appeared to get worse/more obvious):
• much slower walking / shuffling / dragging feet
• confusion and forgetfulness
• mixing up days/medication
• staring into space / seeming not quite there / eyes appear quite glazed/glassy
• struggling with coordination (such as being unable to tie her shoes)
• loss of grip in her hand
• dropping things regularly
• spilling food
• food around mouth/dribbling
• very withdrawn and quiet
• less interest in going out
• started taking anti-nausea meds & paracetamol daily (she HATES medication she’s declined all but necessary medication continuously so whilst for some people paracetamol wouldn’t be a big deal, it is for her)
• emotionally saying things like I think it’s soon and ‘I don’t think I have long left’ (again, big for her because she cannot mentally deal with the prognosis and previously hasn’t acknowledged things like that).
To outsiders she can still look ‘okay’ because she is technically:
• still walking (albeit extremely slow)
• still eating some (again, very slowly and small portions)
• still talking (but briefly, more often than not she’s very quiet)
• still dressing herself (but getting things confused like shoes on wrong feet, can’t find the hole to put her arm through in a jacket, etc).
But those of us who know her feel like she is hugely different now.
She is the type of woman who’ll repeatedly tell herself ‘if I eat, it’ll give me a better chance’, she wouldn’t easily succumb to having low appetite. She was only about 8st naturally, she’s probably around 6.5/7st now but is still eating, but I can see she is forcing it - it’s clear she doesn’t want it and has no enjoyment from food.
She has always avoided naps as much as possible having a nap because in her mind, she thinks that’s wasted time. I’d say she probably sleeps now 12hrs each night and maybe a further 3-4hrs during the day from naps.
It’s really hard to try and explain how she really is someone who would fight and fight.
We had hospice involved recently and I came away feeling as though we weren’t really ‘heard’ because they speak very textbook - ‘people sleep more, eat less, become bedbound” etc.
I know they’re super experienced and I feel for a huge % of people this would be the case regarding the ‘textbook’ downhill trajectory but I also feel like they don’t understand THIS specific woman and how huge these changes are for her personality and baseline. This was the first time this particular hospice nurse met her, so it’s hard to expect her to see any change when she doesn’t know Mum at all.
My partner’s aunt very recently died from cancer within a local hospice and her decline felt much more like what hospices describe traditionally as ‘textbook’. She was a phenomenal woman. But I just struggle to see my mum following that same path (again, everyone’s journey is different, I know that).
I think I’m struggling because I don’t know whether:
• we are genuinely nearing the end now OR
• whether this could somehow plateau again for months.
And emotionally the limbo is so tough. To be told in October they didn’t think she’d make Christmas and to be here still now, don’t get me wrong, I’m beyond grateful they were wrong and I also don’t expect them to be able to accurately tell someone when they’ll pass, but it is so hard to watch her struggle and deteriorate.
It’s difficult for me to even write this and I really want to make clear that I am not trying to rush her death or saying I want her gone. I love my mum deeply and this is so heartbreaking to watch. I think I’m just trying to prepare myself mentally because the uncertainty is honestly one of the hardest parts and this state of ‘anticipatory grief’ whilst still also trying to spin the plates of normal life alongside it all is so so challenging.
Has anyone experienced anything similar with brain tumours/CNS lymphoma/neurological decline where the person still remained quite ‘active’ (not running a marathon or course, but not bed bound at least) or functioning until relatively near the end? Or where the decline suddenly accelerated after a long plateau?
I’d really appreciate hearing any experiences they had in similar situations. It’s not that I don’t trust the doctors/hospice teams - I have tremendous respect for them and am grateful for all they’ve done over the years for her - but I know my Mum best with regards to her personality, her behaviour and I’ve been with her continuously over these last 8m and before then also. She hasn’t had any scans/bloods/etc since October so whilst the healthcare teams have experience and knowledge of past patients, I do feel it’s important I look at this as someone who knows HER and isn’t following just the textbook/historic data/past patient stats/etc.
I just want to hopefully find some real people, with real life experiences so I can sort of get some form of expectation in my mind. I know every patient is different, I know my Mum won’t necessarily follow the same path as someone else’s family member, but just knowing real life experiences I think could help.
Thanks in advance 💛
Is is normal that hospice (MIL is on home hospice) to be closed on holidays? My husband was told that the CNA who changes her diapers will not be coming. I am going to follow up and call them later. I have a doctor's appt. that I have to leave for in 10 minutes. Thanks for your input.
My mom signed up for hospice last time she was in the hospital. No one forced her to do it. She was also going to go to an assisted living place. At the last minute she changed her mind. My brother wanted to force her to go. I did not. Besides, no one would say she was incompetent. She is not, she is just stubborn and somewhat forgetful. Anyway, now she is saying she has a lung doctor appointment. She did have one, but she is no longer seeing the lung doctor because she is on HOSPICE. I keep telling her that, but she is saying it should be up to her! I reached out to the social worker to speak to her. Hopefully they can talk some sense into her. I don't know why she would want to go to all these doctors appointments. She can barely make it to the bathroom and back without losing her breath. (COPD) I don't know if she is actually forgetting everything they told her about hospice or if she just doesn't believe me. It is really frustrating. Her last text to me was "Just put me out of my misery" Lovely huh?
***Edit*** turns out it was 7 hours.
My dad has terminal lung cancer and I’m trying to understand where we realistically are in the timeline from people who’ve been through this. I know nobody can give exact answers, but things have changed so quickly and I feel completely lost.
He was diagnosed terminal last July. Up until last month he was still managing reasonably well considering everything. Then he was admitted to hospital with an infection. He spent 3 weeks in hospital and since coming home he hasn’t gotten back out of bed. His decline since then has been frighteningly fast.
The cancer has spread to his kidneys and peritoneum, and he’s now in severe pain most of the time.
Today I had to help my Mum get him off the commode and put him into an adult nappy because he was too weak and in too much pain to manage himself. He’s always been such a proud man and seeing him like this is killing me.
It’s been over two weeks since he ate anything. The last thing he had was a few spoons of soup. He mostly just sleeps now and is barely lucid at all. When he does talk he’s often confused, talking about things from years ago or things that don’t make sense. Some days he refuses medication completely.
He’s incredibly weak, sleeping most of the day and night, he did have one night a few days ago where he was extremely agitated.
And this is the part I feel awful even admitting, I wish he would stop fighting, he’s in so much pain. Watching him suffer like this feels cruel. I’m terrified that this version of him will become my strongest memory, this frail, confused man in a hospital bed, instead of the person he really was. He was always my hero, the person who protected everyone else, and seeing him reduced to this is breaking me.
I know nobody here can tell me exactly how long we have left, but for those who’ve experienced this stage with lung cancer or hospice care was it days, weeks? Did things suddenly speed up like this near the end?
I think I’m just trying to prepare myself as much as possible for what’s coming.
Thank you for reading.
My dad is currently not doing great. He has end stage heart failure and kidney disease. He was moved to a renal ward after being admitted with some sort of unspecified UTI.
The doctor has had a chat with my mum and I preparing us for his likely death.
Since yesterday, he seems to be experiencing terminal agitation. Today, he has removed his clothes, removed his canulla (which was used for pain meds and saline), trying to remove his catheter, doesnt want anyone to touch him or even be around him. He's refused to have cream applied for his itchy skin (which he usually likes).A hospital chaplain came to see him today and he aggresively sent him away.
I contacted the hospital palliative care team who said they'd go to see him but I'm not too hopeful. My mum is very against comfort meds because she thinks they'll just put him to sleep/speed up his death. His sister is flying in from another country to see him amd won't arrive for two days so she doesn't want to risk putting him into a permanent sleep before his sister has a chance to see him (the sister has had four months to visit since he started declining but that's another story.). My mum is in denial generally and up until yesterday she was heavily pressuring him to eat/drink (despite his clear distress.)
Is there a way to help/deal with these symptoms? Any practical tips or weaker medications that won't put him into a deep/permanent sleep?
Edit: I just arrived at the hospital and the (understandably frustrated) doctor was telling my mum that witholding the medication is cruel. He said they want to treat him with 1.25 Midazolam. She's resisting because a nurse friend of hers is telling her that every patient she's seen who's been given it is dead within three days.
She's agreed now I think
Does anyone else have experience with the behavioral dementia meds not working anymore?
My dad (70) last year was in a MC facility and sent to the hospital for his behaviors. He'd only been at the MC place for about a month (they'd just found him a place after about a month long stay in a geriatric psych facility to get him on a stable regime of meds.) While he was at the hospital he declined quickly and the Dr said he couldn't go back to MC and needed a SNF. He was stuck at the hospital for nearly a year trying to find a SNF, but was fairly settled with meds and behaviors for that long span.
He'd been transferred to a SNF back at the end of February. I was dreading that move because dad had gotten so comfortable with the nurses at the hospital I thought the transition would be awful. He handled that much better than expected, but I guess his behaviors have finally started back up so the SNF sent him to a geriatric psych unit about 2 weeks ago.
The psych place called yesterday to say that he isn't doing well and asking about a DNR, etc . When they try to adjust his meds he stops eating and drinking but when his meds are lowered his aggression and behaviors start back. He's currently receiving fluids and I guess he's still on a lower dose of meds because they said they had him in mittens to try and stop him from pulling his IVs out. I'm waiting on a call back from the nurse to see what next steps might be. Has anyone else experienced this? I know all dementia experiences are different and my dad has certainly been an unusual case. I just don't know what happens from here. Is this the real beginning of the end for him?
Does anyone use Netsmart as their EHR? How is it?
A few weeks ago I posted about my concern with the CM initially when my MIL went on hospice. Since my follow up I have had no concerns and feel like my MIL's needs are being met.
Yesterday I received a call from the nurse that visited and was told the sore on her butt was a Kennedy Terminal Ulcer. We initially thought it was incontinence-associated dermatitis but it is something much more serious. In all of my research concerning the end of life stages I had not heard of KTU. According to the nurse she felt that my MIL was now in the transition phase and maybe has a week or so left.
I had no idea things would progress as quickly as they have. It is upsetting that there is no treatment other than providing comfort but at least I am relieved to know that this was not a pressure created wound or incontinence-associated dermatitis that we could have prevented.
I’m so confused as to how much time my grandfather. 85 year old found out he has melanoma in his lung. He did immunotherapy for a few months and decided to stop treatment. January was the first month without treatment and in May he’s moved in with a family member and is doing at home hospice. He can’t really walk (not related to cancer). So he’s pretty much bed bound. He sleeps 16-20 hours a day but still eats decent for the most part. 2 small meals a day. I know we don’t have exact answers but any time frame? I’m just wondering could it be a year? Months? Hospice says they can’t really give us a time frame till he gets closer to the end. He’s asking questions but I just don’t have any answers.
My husband (31) has been in hospice care for just under two weeks. He has been fighting cancer and about 2 months ago we found out it spread to his lungs. Tried some treatment to hopefully give us more time but ultimately decided to stop and transition to hospice.
Over the past two weeks he has been doing okay: able to get around the house, swallowing just fine, eating little bits of food but mostly drinking boost/ensure, sleeping more than not but able to stay awake for a few hours a time. Just today, I have seen a pretty sudden change. A day or two ago he started mumbling in his sleep but that is not totally unusual for him. Now he is talking much more. He is also acting things out in his sleep - drinking, eating, reaching out, "grabbing" things, etc. I am able to wake him from his sleep when needed but he seems very confused at first but will be able to have some conversation after a moment and then after 20-30 minutes he starts saying things that are confusing again and will go back to sleep. He is still getting up to go from the bed to the chair, or to the bathroom every once in a while.
When I first noticed these things I thought maybe it was medications (he just started taking Ativan yesterday). But now after what I have been reading I am thinking differently. So my question is, does this change happen this suddenly? From some hospice material I have read it seems like this is at the 1-2 weeks before stage but it just happened so fast (at least it seems like it to me). I'm beside myself and am so worried that we have less time.
She’s been in hospice for 3 months now, she use to be able to walk, eat, and take her medications. Three weeks ago, although she still walked and moved her legs started getting swollen and retaining water, for a week now she’s been on pretty much bed rest, because she can’t move it anymore without it hurting, she only stands up for the restroom and barley wants to eat.
She can still talk and have some conversations but now she falls asleep mid conversation. She’s starting to confuse conversations she has with people. Her breathing is getting heavy. She’s so skinny but her stomach is so big.
I’m losing her, I know so many people lose their moms at a younger age, I should be lucky I have had 34 years with her, but it doesn’t seem like enough. I’m afraid to find her dead one day when I check in on her in the mornings. I’m afraid of life without her. She’s always been my comfort person. I don’t know the point of this post.
She’s not even dead yet but I miss her so much already.
A close family member of mine is currently nearing the end of life and recently mentioned seeing deceased relatives. It caught me off guard and I can’t stop thinking about it.
I was wondering if other people have experienced something similar with loved ones who were close to passing. Did they talk about seeing family members or people who had already died?
I’m not looking for debate, just honest experiences from others.
Does anyone have any experience working here? They have a ton of openings right now.
my mum has a friend, who’s had stage 4 cancer for a while now, and she recently let everybody know that she is at the end of her life and does not have long left. after letting everybody know this, she’s become inactive on all social media, and none of her friends have heard from her.
i volunteer at my local hospice and found out yesterday that she has been admitted to the hospice, and will likely die within the next few days.
my mum keeps talking about her friend, how she’s so worried for her, how she’s really struggling with this, how it’s breaking her heart.
i obviously cannot say anything due to confidentiality, and she clearly doesn’t want anyone other than her close relatives knowing. but i feel so guilty watching this upset my mum so deeply, and not being able to share the information i have.
it’s very likely that i’ll also know when her friend has passed before her, and im really struggling with the idea of her talking about her friend while i know she is no longer with us.
i’m not sure if anyone has any advice on how to navigate this, but i thought id come and ask anyway.
EDIT: just to clarify, i absolutely will not break confidentiality !! i was more asking for advice on how to navigate my emotions during this and how to deal with the guilt and upset and all of that. should have been more clear about that (: