Mom in assisted living hospice on Morphine and Halidol. She can’t speak, wants tiny amount of food and water, but can’t move her body. Is this proper care?

Thank you for letting me know. I want to trust what the hospice team says is normal in a situation like this but posted my concerns because I was desperate to be sure.

So sorry for everyone’s losses.

Mom has already begun wanting less and less food and fluids just like you said. Just wants enough to apparently give her some comfort. I appreciate your suggestion to check Nurse Julie’s youtube videos. I wasn’t aware of her and appreciate you telling me about her since I haven’t experienced this before and want to do everything possible to keep my mom comfortable,

Thank you for telling me about how you made the ice chips from your dad’s favorite drink and feeding them with the spoon. I will certainly do that for my mom. The other day one of the hospice nurses matter of factly told me she gave the order that all fluids by mouth and food had to be stopped and since mom still wanted them, I had to call the doctor in. Thankfully the doctor disagreed and said she should still get the small amounts of comfort food and fluids she wanted for now. I will keep your suggestion about making the chips from her favorite drink in mind should her doctor change her orders. Thank you also for the other valuable information you shared.

You are right, the helplessness in knowing we cannot fix things is so hard and exactly why I reached out. Thank you for your kind words and for sharing your experience.

Thank you for sharing your experience. When I questioned members of the hospice team, I was told my mom’s experience is normal but since I have never experienced using hospice before, I needed to be sure that there wasn’t something else/more that I should be doing since it’s so heartbreaking to see her go through all of this.

I cared for both my grandfather, who lived to four months shy of 101, and my dad and was able to keep them both in their homes until they went peacefully in their sleep only because they both remained mobile, They both had cancer and several of their final years overlapped so it was a real help that they lived across the street from each other. At the time I thought that was hard. What an incredible gift you gave to your dad being able to keep him in his own home knowing he was in the same situation as my mom! Thank you for sharing your experience and the things you did to provide your dad with more comfort. Tomorrow when I go back to stay with my mom, I will be sure to check that a pillow is placed under her legs so her feet won’t get pressure on the mattress. Although she is in a professional setting, they have so many patients that they don’t really have the time to explain a lot of things and since this is our first experience in a situation like this, we admittedly don’t know alot of the things to ask about. My mom was such a friendly people person and so active so it is especially hard to see her in this state for so long. Thank you for sharing your suggestions.

Thank you for your thoughtful response, I was just standing in my kitchen tonight thinking about how I feel like I’m trapped in a nightmare after today’s exhaustive events, then remembered to check this site and found your reply.
Yes, it’s so distressing feeling totally helpless at a loved one’s bedside. I appreciate you mentioning moving legs can be a sign of pain. I didn’t realize that and although she is normally still, she did that today. Thankfully, my sister and I had already spoken to the hospice nurse and arranged for more morphine because she was showing distress when the tech attended to her so you mentioning the legs moving as an additional sign of pain was really helpful and confirmed that we did the right thing in requesting that she be more medicated. I also appreciate you confirming the morphine, halidol and ativan. It’s such a worry not knowing if they are using the meds that would make her the most comfortable, she is on all three now. The information you offered is really helpful. Thanks again.

Thank you for responding and reminding us that managing her pain is our top priority. My sister and I sit by her bedside and monitor her care in shifts all day. When she gets to the point that she no longer wants her tiny amounts of food and fluids she has been asking for, yesterday after not verbalizing much in the last few days she said the word hungry to me, your reminder will bring us comfort.

Thank you for your reply. So sorry to hear that your husband is now ill too. May God bless you for being there for so many family members in their time of need. As the sole caretaker for my grandfather who passed at 100, my Dad who passed at 83 and my Uncle who passed at 91, all of which had cancer I know first hand how stressful caregiving can be. Thankfully, I was able to keep each of them in their homes until the end because they all remained mobile, even my 100 year old grandfather. Having to rely on assisted living and hospice for my mom was much more of a challenge because I had more control of the home caretaking decisions but being much older now, in my seventies, with health issues of my own, made home care impossible this time.

Thank you for your response. Please see my answer to the reply above. This was my first experience with hospice - I was the sole caregiver to a 100 year old grandfather with cancer, an 83 year old father with cancer and a 91 year old uncle with 3 separate cancers he battled, all kept in their homes till the end of their lives - this hospice experience was the worst!

Thank you for your response. Our Mom passed away on 12/13/25. A few days before she passed, the assisted living facility where she was in hospice held a Christmas party with outsiders in attendance and as could have been easily predicted by anyone with two firing brain cells, let alone a supposed “medical professional,” it resulted in a significant outbreak of covid.

It was actually two sisters and myself, all in our seventies except for one sister who is in her late sixties, who had been taking shifts monitoring Mom’s care and feeding her small amounts of pureed comfort food and fluids from morning until after the assisted living facility closed.

The whole time my sister with the morning to early afternoon shift was there no one advised her that there was a covid outbreak - even though a quarantine notice should have been posted at the entry door, administration failed to post any signage.

And when I entered the building to relieve my first sister to start my afternoon to early evening shift of monitoring Mom’s care and feeding her the pureed comfort food and giving her fluids, there was still no sign posted by administration to warn visitors of the covid outbreak and no employees bothered to alert me to it (I have an iv contrast allergy so my doctor advised me not to get vaccinated per CDC guidelines, which I made the facility aware of, and always wore a KN95 mask).

It wasn’t until my youngest sister, who is in her late sixties, arrived a couple of hours before closing to finish our monitoring and feeding shifts for the day that she was told that there was a significant outbreak of covid in the building as a result of the Christmas party administration chose to hold with outsiders in attendance with no measures taken to protect their most vulnerable - assisted living hospice patients like our Mom who are self-paying $12,000 a month.

When I asked if any employees tested positive out of concern for our mother’s welfare as well as that of myself and two younger sisters (all three of us have serious health issues and are high risk), I was told that only a number of patients tested positive and were symptomatic for covid.

As a result of holding this Christmas party, despite the clear risks to their own high-paying patients, my sister who did the morning to early afternoon shift became seriously ill with covid and was denied paxlovid because of the heart meds she has to be on. And due to my several hour daily exposure in the facility to provide care to our dying mother and my exposure to my sister who didn’t know she had been infected because of their negligence in alerting visiting family members and patients that there was a significant covid outbreak in the building, I also had to go into quarantine.

Although we hoped that the paid assisted living facility and hospice personnel would provide our mother with the level of care that we were providing and we could resume her care after our required quarantine periods were over, our Mom died all alone two days later.

When our younger sister who was there for the latest shift questioned the aide working for the assisted living facility who was directly responsible for her care, the last time our Mom had received her comfort food and water, she actually said that they had been too busy trying to contain the outbreak so she didn’t know. Again, this was the aide working her shift in which she was directly responsible for our Mom’s care.

Her funeral was yesterday, Dec. 22, 2025 and had to be delayed because my sister had to recuperate from covid and we had to finish our quarantines.

Because of this facility prioritizing a Christmas party - and, to be clear, I am a devout Christian - over protecting the most vulnerable, my sisters and I were denied the opportunity to be with our Mom on the last two days of her life, our Mom died all alone and we worry she felt abandoned as she lay dying.

There were more issues too so I have nothing good to say about hospice.

The guidance you offered is much appreciated. Mom unfortunately passed on 12/13, two days after my sister and I were exposed to covid there because the assisted living facility where she was in hospice had a holiday party with attendees from the outside, in addition to staff and less ill patients and the facility had a significant covid outbreak, which they admitted resulted from their party in their email.

My sister who did the morning to early afternoon shift of monitoring and caring for our mom while I did the afternoon to evening shift contracted covid from the outbreak in the building.

As a result, neither of us could be with our mom during the last two days of her life due to required quarantines and she passed alone, with us being denied the ability to comfort her in her final hours.

Also, we encountered another issue with this assisted living facility that is of concern as well. The day before Thanksgiving, one of the higher level nurses stopped into mom’s room to announce to me that despite our mom wanting to continue being on small amounts of comfort food and fluids, this “medical professional” callously told me in front of my mom as she was laying in her bed fully aware that she was giving a nothing by mouth order from now on.

Since my mom would tell me she was hungry and wanted to stay on her small amounts of comfort food and fluids, I told this to this nurse and she replied that what my mother and I wanted didn’t matter as she had already issued the new order so no more meals or fluids would be delivered to her room.

When I tried to explain to her how her aide said she was still having bowel movements, she insisted that my mother was constipated and her bowel was no linger functioning - without even doing an exam, feeling her abdomen or listening for bowel sounds with a stethoscope.

Of course, I knew what she was proposing - cruelly starving and dehydrating my mom until she passed. She puffed her chest out telling me, her daughter in her seventies, that it was her call and that she had been a hospice nurse for many years before working at the assisted living facility, like that should override compassion and common sense.

Knowing that I wouldn’t be able to discuss this matter with someone who refused to hear me, I waited until this so-called experienced “nurse” left the room and phoned for my mom’s doctor to come to my mom’s room to examine her on an emergency basis.

A few minutes later, her doctor arrived and I advised her of my interaction with this nurse who told me that she had already issued the nothing by mouth order.

When her doctor took the time to actually examine my mom, unlike this nurse, she said my mother’s bowels were working fine, she was not constipated and she would be cancelling the nurses’s nothing by mouth order immediately.

You mentioning how my mom could be awake and aware even if her eyes were closed really hit home because I thought everyone knew that and that’s why it is so important to watch what is said in a patient’s presence.

Surely this nurse knows this so these are matters that may need to be pursued with her employer. We also learned that our mom’s respiratory rate hours before she passed was 44, which could be a sign of distress and right now we have no way of knowing how long she suffered unmonitored with that excessive respiratory rate. Until we get her records we are left with a lot of questions about her care during the two days we were in that required quarantine until she passed.

Thank you for your reply and, yes, my sisters and I only offered mom small amounts of pureed comfort food and water or watered down tea when she asked to eat - she would often tell me the word hungry - or she motioned that she wanted something to eat or drink, always small amounts, and we always waited until we saw that she swallowed what she accepted off the tip of a spoon before slowly offering her another small amount of pureed comfort food and fluid.

Yes, the assisted living facility, nurses, hospice team, etc. were all immediately informed when my sister contracted covid after the assisted living facility we feel irresponsibly held that holiday party for staff, less ill patients and outsiders, which included children who are well known to be walking petri dishes, while we have two types of flu going around in our area in addition to covid, that we would not be able to come in to feed our mom the comfort food and fluids which we had been doing due to our required quarantine caused by their covid outbreak the assisted living facility admitted in an email to patients’ families was caused by their holiday party.

Mom’s comfort food feeding of small amounts of food and fluids was their job, as was her monitoring, since our mom was considered a hospice patient at the highest level of care. In fact, we were self paying $12,000 monthly for that highest level of care, and we advised them that their staff would need to take over that care until they were notified we could resume providing it.

They agreed and had also confirmed that this was the facility’s and hospice’s responsibility at her care level. To be sure, I even asked if we should be moving our mom to a nursing facility when she started to decline and was told that their facility was capable of providing the end of life care as well as the intermediate level of care our mom needed.

When my younger sister, who is in her late sixties and didn’t have the all-day exposure like my other sister and I, arrived after work to monitor her care on the second of the two days into our required quarantine, she found our mom in obvious distress with a respiratory rate of 44 and food resembling mashed potatoes sitting in her mouth.

Our mom was not supposed to be comfort fed unless she was awake and aware and either requested food herself - she would say the word hungry - or signaled her hunger by opening her mouth to receive the spoon feeding of small amounts of comfort food and fluids on the tip of a spoon. You don’t need to be a “medical professional” of course to know this, just a hint of common sense.

My sister asked the aide - who was changing our mom when she walked in and found her with the respiratory rate of 44, as determined by the aide, and the food in her mouth, which the aide did remove - when our mom was last fed and checked on. That aide, who had been responsible for our mom’s care since 3 pm that day - it was now 7 pm - said she and the other staff members had been too busy trying to contain the covid outbreak, which the facility’s administration had themselves caused. In other words, trying to contain the outbreak had been given higher priority than patient care and apparently no additional staff had been called in to help, or temps hired to ensure the most vulnerable were receiving the level of care they were self paying for.

While I was home in quarantine after my exposure, and after learning how ill with covid my sister had become, I called and insisted that they test our mom for covid even though they told me she was showing no symptoms because she had been exposed to my sister who was by now extremely ill with covid because they held that party, which none of us attended.

I was called back and told mom, who was on oxygen, tested negative for covid.

Then, at a little after midnight that night, the assisted living facility called to tell my sister, who was seriously ill with covid from their outbreak and who was the family contact, that they had entered our mom’s room and found her dead.

An hour later, hospice called, confirmed her death and said they were moving her body shortly to the funeral home that had been called by them.

Right now, we have no way of knowing how long our mom laid there helplessly neglected with a respiratory rate of 44 bpm evidencing clear distress before my other sister got there after work at 7 pm that day, how aware mom was and the amount of suffering she endured.

Thank you for your kind words, they are appreciated.

Thank you, it’s so hard worrying she passed thinking my sister and I abandoned her because of the in and out state she was in there is no way she could understand why we weren’t there during those final two days. So sorry to hear you also experienced the same nightmare. I can’t believe that so many years after covid initially started spreading that families are still suffering through the same nightmare of not being able to be with a loved one when they need us the most. I too still wear a KN95 mask whenever I go out to the stores or doctor’s since I couldn’t get the vax because of my allergy to iv contrast and I don’t have the enzymes to metabolize paxlovid or the other medications to treat covid - bad genes all around! I found a Powecom KN95 mask distributor here in the U.S. that sells a new, more breathable version of the ear loop style and it really is easier to breathe in. I spent a week in Hopkins Hospital two times for noncovid related health issues as well as spent 6 hours in one ER trip and then 10 hours in another sitting in a crammed emergency room also during the height of covid and by wearing these masks I never contracted it. The website for the more breathable KN95 masks is bonafidemasks.com. My sister who contracted the severe case of covid in the outbreak wasn’t wearing a KN95 mask. I was and never got it. Thanks again for sharing your experience.