Please share experience with hospice

[TexasProud]

Can you please share your experiences with hospice. How often did the nurse come? When it was obvious death was near, did someone stay? How did it work for you?

[prairiewindmomma]

We’ve had four different experiences across three agencies. Actual visits varied according to need. We had a team of assigned nurses, a clergy person, and a grief art therapist. Early into the process they were usually weekly unless there was a need (like a lab draw for seizure meds). Towards the end there were twice daily visits. Rarely did a visit last more than an hour—there was no staying with us even with agonal breathing, organ shutdown, near coma, and a spiked fever (all signs of imminent death).

ETA: we had great experiences and wouldn’t hesitate to bring hospice in ASAP. It was way easier than getting care in the community.

Edited September 7, 2022 by prairiewindmomma

[Faith-manor]

It definitely definitely goes community by community. Some have a lot of resources and services, some not. Ours had almost nothing. My father was on hospice for two weeks before he did. We saw the nurse once. She came at the beginning to talk us through it, order his pain meds, and make sure the hospital bed and commode was delivered before he came home from the hospital. No other kind of care or assistance was offered except a grief support group for mom. We didn't even have the offer of a CNA for sponge bath or anything else. Mom was disabled and basically the nurse said either the offspring or some other relatives had to move in and take care of him or he could go to the nursing home. I am not a natural born nurse - medical anxiety since my car accident and not good at it to begin with so bam - and my dad had been abusive to me in the last years of his life so I had zero interest or ability to manage such intensive, physical care. Mom couldn't lift him or do any of it either. But my sister insisted he be at home so she had to do the care. Thankfully, he slept all the time, and didn't last long or it would have ruined her health because she was barely strong enough to lift him.

The nurse did come to call time of death and be with us when his body was taken by the funeral home.

Again, very kind person. She even came to his funeral. But apart from the first visit and then coming when he died, meds, and medical equipment he needed, nothing else was provided.

My grandmother died on hospice, but in her assisted living home. They had two CNA's and one LPN on staff 24/7 so we had no physical care of her, and did not need to be there 24/7 nor was she alone when she died. I never even met the hospice R.N. I think my mom did. But again, not a negative experience.

[itsheresomewhere]

Wonderful experience.  They came weekly in the beginning unless a blood draw was needed.  Most of those visits last at least an hour as the wonderful nurses were answering so many questions of my elderly relative.  Then we went to 2-3 visits a week.  At the end, they stayed a lot but my elderly relative had them leave when he wasn’t going to last more than an hour.  The agency that was used was fantastic.  They answered questions and repeated the answers to the relative was wasn’t thinking straight. Even answered the questions on the phone with so much patience. Only one nurse did they ask not to come back as she was not great at dealing with a wife with dementia.  The repeated questions were getting to her in that hour.  But not the agency’s fault as honestly, it was getting a bit on everyone’s nerves with the stress. 
 

I would recommend hospice anytime.  They were great. 

[Anne]

Agreeing that the care you receive will be community-dependent.  My MIL received fabulous care in Grand Rapids when she died. They were so kind and so helpful, and so respectful to my mil, even though she was becoming pretty confused.  Someone came to bathe her a couple of times a week and they were always available via phone for any questions.   My mil passed pretty peacefully surrounded by family and no hospice workers came.  

Anne

[KrissiK]

We had a wonderful experience. My dad passed last summer. He spent a week in hospice care before he died. He was non-responsive about 6-8 hours before he actually passed. I am just stating that to give context. Some people spend a lot more time in hospice. Our nurse was an angel. I still tear up thinking about her. The nursing home called my mom and me about 5 hours before he passed, when it was obvious the end was near. Our nurse, G, was in and out, attentive without hovering. She let us know exactly what to expect so as the process went on we didn’t need to panic or worry. She made sure Dad was completely comfortable in every way she knew how and explained everything to us.  She was just…. I don’t know how to explain it, but she was a rock for us to cling to.  I was there when my dad breathed his last breath. I read Scripture to him and prayed.   It was a beautiful experience and I just cannot speak highly enough of our hospice nurse.

[Pawz4me]

If you have more than one organization that serves your area you'll want to research before choosing one. Most hospice organizations used to be non-profit, now many are for-profit. It's a generalization, of course, but from what I gather it seems that the ones who are still non-profit tend to get the best patient/family reviews.

[Tenaj]

My mom was in hospice care for about 24 hours before she died.  This was a separate wing of the hospital and though it was a short time, they were wonderful.  They helped us through that day, helped Mom be comfortable and were so kind.  I'll never forget their kindness, gentle spirits and the wonderful knowledge they were able to convey that helped us to deal with the different steps Mom went through that day.

[TexasProud]

23 minutes ago, KrissiK said:

We had a wonderful experience. My dad passed last summer. He spent a week in hospice care before he died. He was non-responsive about 6-8 hours before he actually passed. I am just stating that to give context. Some people spend a lot more time in hospice. Our nurse was an angel. I still tear up thinking about her. The nursing home called my mom and me about 5 hours before he passed, when it was obvious the end was near. Our nurse, G, was in and out, attentive without hovering. She let us know exactly what to expect so as the process went on we didn’t need to panic or worry. She made sure Dad was completely comfortable in every way she knew how and explained everything to us.  She was just…. I don’t know how to explain it, but she was a rock for us to cling to.  I was there when my dad breathed his last breath. I read Scripture to him and prayed.   It was a beautiful experience and I just cannot speak highly enough of our hospice nurse.

This is what I expected.  This is not what we got.  Hospice was a nightmare in my mind, but with the other posts maybe what we should have expected.  Will post more later. My mom died a little over a week ago.

[Scarlett]

1 hour ago, TexasProud said:

Can you please share your experiences with hospice. How often did the nurse come? When it was obvious death was near, did someone stay? How did it work for you?

My FIL was on hospice.  I don’t think the nurse came every day until it was apparent the end was near.  She predicted he would go within 48 hours and she was correct.  My MIL had time to gather herself together and call an elder to come pray with him.  
 

Hospice was wonderful for my FIL and my MIL his caretaker.  
 

I am sorry @TexasProud. If you posted already that she died I missed it and I amsorry. 

Edited September 7, 2022 by Scarlett

[Bambam]

I'm so sorry to hear about your mom. ((hugs))

 

[TexasProud]

taking out personal stuff.  Thank you eveyrone.

Edited September 8, 2022 by TexasProud

[teachermom2834]

Very limited experience. My mom was abruptly diagnosed with a brain tumor and died exactly four weeks later so everything was very fast and very traumatic. Initially I would say that we felt very lost. Everyone said to call in hospice and that they would be wonderful and exactly what we needed but it just didn't seem like enough or what we needed. She was dying and she was mentally compromised and it just didn't seem like enough whatever they were going to do. Somehow we got her placed in the one residential hospice facility in our city. It had only 8 beds for a medium sized city. That was what we needed. She really needed to be there and they were kind and that was fine.

But what we were offered as far as hospice care before she was able to get into the facility where she was for about a week? Very underwhelming and we felt so lost and so overwhelmed and alone. Surely we were expecting something other than what it was so not blaming them. It all happened so fast and was such an extreme and traumatic situation. But all we had ever heard was that hospice was so wonderful and just call hospice and when the time came it was like "that's it?".

Again, not blaming hospice. Surely our own ignorance was at play. But it was a bad situation and it wasn't really the answer until we were able to get her into the facility. My mom went to work one day and everything was fine (as far as we knew)  and the next day she had a brain tumor and couldn't tie her shoes and two weeks later she was on hospice. So it was a very crazy time and we just never found whatever service it was we needed to steer us through. 

I'm sorry about your mom.

[YaelAldrich]

I'm so sorry.  That must have been hard to witness.

I've only had to deal with hospice once and it was less than 48 hours as my sister died very soon after going into hospice care.  She was in their facility and I can say they weren't so helpful in the minute to minute stuff but overall they were a help to our family in our time of need.

[ScoutTN]

@TexasProud I am so sorry for your loss and for the lack of help and care from hospice. 

[Kassia]

@TexasProudI'm so sorry for your loss and that hospice didn't give the care you deserved and expected.  

[mommyoffive]

50 minutes ago, TexasProud said:

This is what I expected.  This is not what we got.  Hospice was a nightmare in my mind, but with the other posts maybe what we should have expected.  Will post more later. My mom died a little over a week ago.

I am so sorry for your loss Texas.  I am sending lots of prayers and hugs to you and your family.

[Pawz4me]

I'm so sorry, @TexasProud. 

[barnwife]

I am so sorry for your loss.

My family was very fortunte that hospice was a great experience when my dad needed it. They came daily at the end for a short visit. We could call at any time for another visit. When he did pass, the hospice nurse came to officially note time of death and contacted the funeral home. 

A couple hospice workers actually attended his funeral, which none of us expected.

Again, I am sorry for your loss.

[Spryte]

I am so sorry for your loss.

[TexasProud]

Taking out personal stuff. Thank you everyone.

Edited September 8, 2022 by TexasProud

[Soror]

My fil did hospice in a specialized wing in the VA hospital. So, he had help whenever he needed it, whatever medicine he needed and we could visit frequently ( I can't remember exactly but don't remember hardly any rules with visitation). They let us know when his time was coming and everyone could be there then and there was a room for the overflow. I don't recall the nurse being in the room when he passed but maybe I'm just forgetting. They were checking on him often as he was getting a good amount of morphine at that point but they weren't in there constantly. 

@TexasProud I'm sorry for your loss 😞 Prayers of comfort for you during this time (sorry I hadn't read past the first post when I posted)

Edited September 7, 2022 by Soror

[TexasProud]

9 minutes ago, Soror said:

My fil did hospice in a specialized wing in the VA hospital. So, he had help whenever he needed it, whatever medicine he needed and we could visit frequently ( I can't remember exactly but don't remember hardly any rules with visitation). They let us know when his time was coming and everyone could be there then and there was a room for the overflow. I don't recall the nurse being in the room when he passed but maybe I'm just forgetting. They were checking on him often as he was getting a good amount of morphine at that point but they weren't in there constantly. 

And I didn't really expect someone to be in the room constantly, but available for us, to give us guidance about giving drugs and such...yeah.  

[Soror]

1 minute ago, TexasProud said:

And I didn't really expect someone to be in the room constantly, but available for us, to give us guidance about giving drugs and such...yeah.  

Yes, I would expect that too but I don't have experience with anything but hospice in the hospital. I 'm sorry you didn't get the support you needed during such a difficult time.

[TexasProud]

1 minute ago, Soror said:

Yes, I would expect that too but I don't have experience with anything but hospice in the hospital. I 'm sorry you didn't get the support you needed during such a difficult time.

Yes, my mom even said hospice was a BIG mistake a few days before she died.  All this crap about passing away peacefully at home. It would have been better in the hospital.

[Pawz4me]

I'm going to put this here just in case you want to look at it sometime. It's a Kaiser Family Foundation story on hospice care. It's several years old, but I'm pretty sure the issues discussed are still concerning, and given Covid and the labor market, perhaps even worse. And please nobody think I'm slamming hospice organizations. In general I think they're fabulous and do great work. But sometimes they do fail.

No One Is Coming: Hospice Patients Abandoned at Death's Door

Quote

How often hospices fail to respond to families or patients is an understudied problem, experts say, in part because it’s hard to monitor. But a recent national survey of families of hospice patients suggests the problem is widespread: 1 in 5 respondents said their hospice agency did not always show up when they needed help, according to the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey, designed by the Centers for Medicare & Medicaid Services.

“That’s a failing grade,” Teno said. “We need to do better.”

Hospice care in the U.S. got its start in the 1970s, driven by religious and nonprofit groups aimed at providing humane care at the end of life. Today, however, many providers are part of for-profit companies and large, publicly traded firms. It’s a lucrative business: For-profit hospices saw nearly 15 percent profit margins on Medicare payments in 2014, according to the Medicare Payment Advisory Commission.

Most families are happy with hospice, according to the CAHPS survey. In data collected from 2015 to 2016 from 2,128 hospices, 80 percent of respondents rated hospice a 9 or 10 out of 10.

Kaiser Family Foundation polling conducted for this story found that 12 percent of the public had hospice experience. Among that group, 9 percent were “dissatisfied” and 89 percent “satisfied” with hospice.” (Kaiser Health News is an editorially independent program of the foundation.)

Indeed, many people give hospice glowing reviews. Lynn Parés, for instance, gushed about her experience from 2013 to 2014 with Family Hospice of Boulder, Colo. When Parés’ 87-year-old mother cut her leg, staff came daily to treat the wound. A nurse visited every day in the dying woman’s last week of life. The hospice also provided family counseling, spiritual guidance and volunteers who surrounded her mother’s bedside, singing old-time songs.

“They were in constant contact with us,” Parés said of the hospice. “It’s amazing to me how much heart there is involved in hospice care.” After her mother died, Parés and her siblings donated part of their inheritance to the hospice. “I can never say enough good about them.”

Following industry trends, the small, family-owned Boulder company subsequently got acquired by a large regional chain, New Century Hospice, in 2015. As the industry grows — hospice enrollment has more than doubled since 2000 — some companies are not following through on their promises to patients.

For instance, data show many hospices fail to provide extra care in times of crisis. To get Medicare payments, hospices are required to offer four levels of care: routine care, which is by far the most common; respite care, to give family caregivers a break for short time periods; and two levels of so-called crisis care, continuous care and general inpatient care, when patients suffer acutely. But 21 percent of hospices, which together served over 84,000 patients, failed to provide either form of crisis care in 2015, according to CMS.

 

[Corraleno]

I'm so sorry about your mom, Texas; it's awful that her hospice experience made things worse instead of better.

[Selkie]

I'm very sorry for your loss.

My mom chose to die at home and had hospice care for the several days leading up to her death. Overall, we found hospice to be helpful and a comfort during a very tough time. A nurse stopped out once a day to help with meds and other care. No one from hospice was with us during her last hours and when she died. We let hospice know by phone when she died and they contacted the funeral home. 

[Corraleno]

The relative I looked after was already in assisted living (due to developmental disabilities rather than physical ones) when I arranged hospice due to congestive heart failure. He was actually still really active and happy, just a bit slower than usual, and I was surprised they recommended hospice so soon. The nurse came in 2-3 times a week, I think, and was super sweet with him. She didn't need to do much medically, since they had a nurse on staff 24/7. Being on hospice basically just allowed them to significantly increase pain meds (although in retrospect I think they kind of overmedicated him, because his pain was from arthritis, not cancer pain, and he seemed pretty loopy sometimes once hospice got involved). He was only on hospice for about a month, and no one ever suggested that the end was near, but TBH I don't think anyone could have predicted it. His last day he was still really happy and active, I saw him in the afternoon as he was leaving on an outing with other residents, he was super chatty at dinner, and then went to his room to lie down after dinner. He fell asleep watching TV with his cat in his lap, and just peacefully slipped away. 

My experience of not using hospice was much worse: When it became obvious last year that my step-mom didn't have a lot of time left, I begged them to contact hospice. I live 3000 miles away and my sister is 1000 miles away, and they really needed help, but they insisted that "things aren't that bad yet" — ignoring the fact that in many ways the whole point of hospice to get control of the process before things get "that bad." It was super hard on my sister, too, because they just kept insisting she fly down there every time there was a crisis. And because my step-mom did not have any sedation or pain meds, when her breathing became extremely labored they panicked and called 911. My dad is in a wheelchair and wasn't able to get a ride to the hospital so she died all alone surrounded by strangers and machines instead of dying peacefully at home as she wanted. My dad is absolutely haunted by the fact that he wasn't with his wife of more than 50 years when she passed and never got to say goodbye. 

[*****]

I am sorry your loss and hospice wasn't for you what is was for our family. I will be praying for all of you. 

Edited September 7, 2022 by *****
reread OP's experience

[fairfarmhand]

I’m so sorry, OP, that’s dreadful. And I’m wondering if your hospice experience reflects what Covid has done to our medical people. How dreadful.

[TexasProud]

11 minutes ago, Corraleno said:

 

My experience of not using hospice was much worse: When it became obvious last year that my step-mom didn't have a lot of time left, I begged them to contact hospice. I live 3000 miles away and my sister is 1000 miles away, and they really needed help, but they insisted that "things aren't that bad yet" — ignoring the fact that in many ways the whole point of hospice to get control of the process before things get "that bad." It was super hard on my sister, too, because they just kept insisting she fly down there every time there was a crisis. And because my step-mom did not have any sedation or pain meds, when her breathing became extremely labored they panicked and called 911. My dad is in a wheelchair and wasn't able to get a ride to the hospital so she died all alone surrounded by strangers and machines instead of dying peacefully at home as she wanted. My dad is absolutely haunted by the fact that he wasn't with his wife of more than 50 years when she passed and never got to say goodbye. 

See with my husband's grandmother it was SO SO SO much better.  If my mom had not done hospice, she could have been in the hospital where they would give her fluids, which hospice refused to do, given her the appropriate level of pain meds, etc.  My husband's grandmother and even his dad a couple of years ago, died with all the family around them and it was peaceful.  Not this agonizing are we doing the right thing and watching her labored breathing.

[Kassia]

20 minutes ago, TexasProud said:

.  Not this agonizing are we doing the right thing and watching her labored breathing.

I'm so sorry that you have to go through this on top of grieving for your loss.  My father died in a way that haunted me for a long time.  I realized I just had to let it go because I couldn't change anything but it was very hard.  

[TexasProud]

50 minutes ago, Kassia said:

I'm so sorry that you have to go through this on top of grieving for your loss.  My father died in a way that haunted me for a long time.  I realized I just had to let it go because I couldn't change anything but it was very hard.  

Yep, I know that will be necessary.  I so rarely get mad.  I just need to be mad for awhile. But in a week or two, I will move on. 

[prairiewindmomma]

1 hour ago, fairfarmhand said:

I’m so sorry, OP, that’s dreadful. And I’m wondering if your hospice experience reflects what Covid has done to our medical people. How dreadful.

My friend that was a hospice nurse through much of covid (now works in hospital) says that staffing levels were/are scarily low.  Too few beds are open in skilled nursing and so demand is higher for hospice with post covid recoveries.

We were given training on oxygen including handouts, a chart of the meds with what they did and dosing, and good phone support. One relative ended up transferring to the hospice house when we couldn't get good pain control for them at home. I'm sorry you guys were left feeling unsupported.  Of the deaths we've been through, some have been really hard and a lot of work and not anything that could be described as peaceful.  It's traumatic to the family.  I'm sorry you guys had to go through that. Those deaths kind of haunted me for a while before the memories faded with time. 

Hugs.

[Ottakee]

4 hours ago, TexasProud said:

And I didn't really expect someone to be in the room constantly, but available for us, to give us guidance about giving drugs and such...yeah.  

My friend is on hospice.  8 weeks ago was planning a 100 mile hike with her dh and today is on hospice and likely has 1-2 weeks at most.

her husband was given the meds and directions and they have an on call nurse for further directions.   

[Kassia]

10 minutes ago, Ottakee said:

My friend is on hospice.  8 weeks ago was planning a 100 mile hike with her dh and today is on hospice and likely has 1-2 weeks at most.

her husband was given the meds and directions and they have an on call nurse for further directions.   

Oh, what a horrible shock.  I'm sorry. 

[TexasProud]

Taking out personal stuff. Thank you eveyone.

Edited September 8, 2022 by TexasProud

[barnwife]

5 hours ago, TexasProud said:

I guess what surprised me most is that we had this "comfort kit" with morphine and other drugs I don't remember..atovan maybe to help panic.  But almost no direction in how to use them.  When it was so obvious that last day that she was rapidly approaching death...like how was I supposed to do this?  Give her morphine? How much is too much? Am I doing more harm? How exactly do I set up the oxygen?  Again, if my husband hadn't been there....  But even he is second guessing himself because in his job, he tries to save lives not just make people comfortable.  He still wonders if he was too stingy on the pain meds.  But that is something hospice nurses should know and to me should have helped with.

My mom was also given a similar sounding type comfort kit thing at the end of my dad's battle with cancer. I wasn't there when she got it. After I arrived, I asked the next hospice person who visited about it. Basically, she told me to be generous in using it. I asked about drug interactions and she said we could basically give anything in it together and it wouldn't matter. I don't remember how often the doses needed to spaced/if we discussed that. 

They absolutely should have been able to help with questions about that stuff.

25 minutes ago, Ottakee said:

My friend is on hospice.  8 weeks ago was planning a 100 mile hike with her dh and today is on hospice and likely has 1-2 weeks at most.

her husband was given the meds and directions and they have an on call nurse for further directions.   

What a terrible situation. I am so sorry. 

[Annie G]

I’m so sorry for your loss. I’m not sure you ‘expected too much’. With MIL, we were told a pretty rosy story about how great hospice was. And when they were there, it was mostly ok. What we weren’t told is how little they’d be there and how much we’d have to do. I’m not blaming the hospice, we clearly didn’t ask enough before choosing. But I do think they should have told us upfront how often they’d be coming and how much we’d have to do. We’d never done it before so didn;t even know what to ask.

Again, so very sorry. I didn’t realize your mom was going so quickly. 

[Catwoman]

@TexasProud I’m so sorry to hear about your mom. I thought she still had more time. 😞 

[TexasProud]

2 hours ago, Annie G said:

 

Again, so very sorry. I didn’t realize your mom was going so quickly. 

Thank you everyone.

Edited September 8, 2022 by TexasProud

[Kassia]

Again, I am so sorry @TexasProud  That is heartbreaking.  Please don't blame yourself - you did the best you could with the knowledge you had.  Sending hugs.

[TexasProud]

1 hour ago, Kassia said:

Again, I am so sorry @TexasProud  That is heartbreaking.  Please don't blame yourself - you did the best you could with the knowledge you had.  Sending hugs.

Thank you everyone.

Edited September 8, 2022 by TexasProud

[Eos]

11 minutes ago, TexasProud said:

She might be alive if I had stayed.  She looked at me and told me she was so glad I was back ( I was gone for 5 days.) She quit eating and drinking and gave up.  If I hadn't agreed to hospice, she would still be getting care.

Very gently, no.  It was her time.  I'm so sorry for your loss and the trauma you experienced as it unfolded.

I'm sorry hospice was so little help, but dear TexasProud, another way to see it is that she was so glad you were back so she could move on knowing you were there with her. She chose not to do the third med, and you lightened her burden by being there as she was finding her way.  

[Mrs Tiggywinkle]

I am so sorry about your mother.

I interact frequently with hospice. It’s one organization here that covers 3 counties and is, like everyone else, very understaffed. Hospice funding is weird and they can’t pay nurses the best so they don’t attact anyone who doesn’t really want to work hospice.  There is one hospice facility for three counties and they only have a few beds. Most is either in home or in a skilled nursing facility(and there is only one here that is decent at all).

We get fairly frequent 911 calls from families who are completely overwhelmed and don’t realize that hospice doesn’t send CNAs or other help in. I do not understand why doctors and their staff aren’t clear about that.  I know people don’t want to enter a hospital or a skilled nursing facility for their last days, but that means you really need family that is able to assist you 24/7.  Truthfully in today’s world, very few people actually have that.  There is a nice hospice facility but they have 8 beds for three counties.

But aside from some rare places, it seems hospice is there to prescribe meds for comfort and pay for things like a hospital bed. I follow two hospice nurses on TikTok and have learned a lot, like why hospice does not give fluids.  But overall, I have met many, many people who have not understood the level of care and how rarely a nurse will actually be there, so I don’t think your situation is unusual or that you’re dumb or were taken in.  It seems to be very common.   The truth is that end of life is just hard and there often are no good choices.  I feel that many of us are so removed from end of life and death that we don’t know what to expect.  I am not really sure why, unless people just really did die earlier of other things like pneumonia when my grandmother and even my mom were growing up, because they’re all so surprised at how poor my grandmother’s quality of life at 89 is—but my observation is that, generally, the super geriatric population has a poor quality of life.

But I am very sorry for your loss. I am sure there is nothing you could have done differently that would have changed the outcome.

Edited September 8, 2022 by Mrs Tiggywinkle

[Annie G]

When people quickly decline it’s easy to second guess and play the ‘what if’ game. But sometimes people really do simply decline quickly. Their bodies are done. My father in law was doing well and expected to go home and begin treatment for his cancer, but quickly declined and passed overnight. His doc came in to do the discharge exam and learned he’d passed, and was so shocked he just slumped down into the nearest chair. He just couldn;t believe it.  My mom’s passing was much the same. She’d had a wonderful weekend and was so active, but then passed so quickly. 
‘Cancer sucks.

You did the best you could do, and your reasoning was sound-going home to rest because you expected a long decline.  It’s understandable that you’re second guessing your decision, but I hope as you work through your grief that you will find a way to show yourself some grace. 

[cintinative]

wow. TexasProud, prayers for you.  It's just awful what you have been through and I'm so very sorry. I pray that somehow better memories will replace this one one day. Know that your hurt is seen by us here. 

[TexasProud]

1 hour ago, Mrs Tiggywinkle said:

I am so sorry about your mother.

I interact frequently with hospice. It’s one organization here that covers 3 counties and is, like everyone else, very understaffed. Hospice funding is weird and they can’t pay nurses the best so they don’t attact anyone who doesn’t really want to work hospice.  There is one hospice facility for three counties and they only have a few beds. Most is either in home or in a skilled nursing facility(and there is only one here that is decent at all).

We get fairly frequent 911 calls from families who are completely overwhelmed and don’t realize that hospice doesn’t send CNAs or other help in. I do not understand why doctors and their staff aren’t clear about that.  I know people don’t want to enter a hospital or a skilled nursing facility for their last days, but that means you really need family that is able to assist you 24/7.  Truthfully in today’s world, very few people actually have that.  There is a nice hospice facility but they have 8 beds for three counties.

But aside from some rare places, it seems hospice is there to prescribe meds for comfort and pay for things like a hospital bed. I follow two hospice nurses on TikTok and have learned a lot, like why hospice does not give fluids.  But overall, I have met many, many people who have not understood the level of care and how rarely a nurse will actually be there, so I don’t think your situation is unusual or that you’re dumb or were taken in.  It seems to be very common.  

Taking out personal stuff.

Edited September 8, 2022 by TexasProud

[TexasProud]

50 minutes ago, cintinative said:

wow. TexasProud, prayers for you.  It's just awful what you have been through and I'm so very sorry. I pray that somehow better memories will replace this one one day. Know that your hurt is seen by us here. 

Thank you everyone

Edited September 8, 2022 by TexasProud